Love stories: The Greek Caring Journeys Project Summary

Full text

October 2013
A/Professor Debbie Horsfall, University of Western Sydney
Dr Ilse Blignault, University of New South Wales
Dr Astrid Perry, Multicultural Health Service, SESLHD
Penny Antonopoulos, St. George Migrant Resource Centre
Dr Donna Bridges, University of Western Sydney
Sofia Zogalis, University of Western Sydney
Love Stories
The Greek Caring Journeys Project
Summary

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A Migrant Love Story
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1959 that was when we came to Australia. On the Patris. Everyone came out on the
Patris. There were lots of us Greeks on that ship, all coming looking for work. It was the
war with the Germans and then the civil war. Difficult years. We had one pair of shoes
each and we’d take care of them so that we could wear them to church. And when they
had a hole in them we’d have them repaired over and over again. We did suffer though.
On the ship one man said to me ‘why don’t you get some moussaka?’ I took some, and
how did they make it? They had two little pieces of eggplant. It seems like they did not
have the recipe. We were young. We married in Greece and came here on the ship. We
had family here in Australia: my uncle, my aunt, two of my brothers. They had been here
a while. In those days whoever wanted to stay in Australia paid ten lire and they could
stay. So we stayed with them until we could afford a house of our own. And praise God
we paid the house off. We weren’t paying rent. We came for a better life, yes a better
life.
I am very happy. All my children are married. They have children. I have grandchildren.
Here let me show you something (brings out a photo album). Here I am at 5 years old.
Here is George as a soldier. This is at our wedding and this is our son and daughter.
There are only the two of us now. We have each other. Our grandchildren come over in
the afternoon and we give them little treats to eat. Once a week I cook for my daughter
and her children.
I must say as the years pass you become more accustomed to the things that happen. In
the beginning you are in shock. You are depressed. You ask why. Why has this happened
to me? Then you get used to it and you say ‘that’s life, have patience’. Things change.
Nothing’s the same my dear. You are not the same as you were before. You wake. You
take your tablets. You sit and then you clean and you cook and eat. It all depends on
what life throws at you. But bit by bit we manage. Slowly, slowly. Together we manage.
Now the mattress on the bed we turn it over together. I do the washing and George
hangs it out. It does tire me. I do continue to try. Sometimes we say ‘this is what we are
going to do’ then after five minutes we ask each other ‘what did we agree to do’? We
will have forgotten. But we laugh; it’s funny sometimes when you get older. I feel like I
am 20 on the inside. Slowly slowly whatever we can do, we do. I am busy. We try to eat
lightly as much as we can. We go to Darling Harbour on a Sunday to walk a little bit. To
have some coffee. To look at the shops. Our friends visit when they can. They brought
that cake over. Have a piece? Take some with you in the car.
Basically we say it’s best for someone to stay in their own home for as long as they can.
To stay together. It would be lonely if one went. And if you are an older person and you
go to another house, you feel out of place. If we can’t make a decision we fight about it.
There isn’t a human that doesn’t argue. It strengthens the love.
Life has got expensive now. We have other tablets as well as those. And the cost of food
and everything. And as I’ve said from time to time you get depressed. But then you just
continue on. I only need to put out George’s clothes, he can dress himself. Then the
tablets, he has to take one before he eats, I put the tablet into water to soften it. The
others he finds difficult to swallow them as they are large. I crush those and put honey
on them. He calls me his lovely girl.
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This story has been written by weaving together the voices of our carer participants from interview
transcripts.

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Summary
This report documents the findings of a short-term longitudinal study which sought in-
depth understandings of the help-seeking behaviours of elderly Greek carers. The
research was supported by a partnership grant between the University of Western
Sydney, the University of New South Wales, South Eastern Sydney Local Health District
(SESLHD) and the St George Migrant Resource Centre (SGMRC). In 2012-2013, we
conducted 3 focus groups and 1 follow-up forum with service providers and Greek
community leaders in the St George region in southern Sydney (n= 25). Over the
intervening 6 months we conducted 2 in home interviews and 2-4 telephone interviews
with 13 older Greek carers, all of whom were clients of the St George Migrant Resource
Centre. By interviewing carers over a 6-month period, we have been able to document
a part of their caring journey, in particular potential turning points in that journey;
points at which the carer can decide to seek or accept help or to reject it. Through a
deeper understanding of carers’ decisions and decision making we aim to inform service
providers about how to develop and promote culturally appropriate services and
negotiate them with carers and care recipients in a timely way.
Our motivation for this study was threefold:
1. To understand the caring journey from the carers’ point of view
2. To understand formal (services) and informal (family, friends, neighbours) supports
people were already accessing and how they made decisions about seeking and
accepting help
3. To provide evidence that would enable service providers to provide information
and support that results in a higher uptake of services with the overall aim to
encourage people to use services so that they can stay in their own homes and
avoid institutional care.
We found that most carers wanted to remain as independent as possible and to avoid
institutionalised care of their spouse. They strove to avoid a forced separation and the
loss of the one they love. They placed great value on their caring role which, whilst at
times was a struggle, gave them a sense of meaning, purpose and belonging. As such
we conclude that perhaps the most important question for people providing services is:
how can we support people to keep doing what they value, rather than to relieve them of
a burden? Assisting carers to continue to love and care for their spouse may be the most
helpful orientation and language for service providers to use. Aligned with this we
suggest a focus on the caring couple, the dyad, rather than perpetuating the notion of
individual intervention.
We also found that the carers had great resourcefulness, strengths and competence.
They were all in long term relationships, had negotiated coming to a foreign country and
establishing themselves and were now in the process of negotiating old age, increasing
frailty and enforced separation either through death or institutionalisation. At the same
time they continued to provide care and support to family and friends. They took great
pride in their ability to take care of each other and their homes. Most importantly our
participants showed that they are people first, carers and carees second. So, a further
question for service providers is: how can we support older carers to continue their
relationships and further develop mutually supportive caring networks?

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Many of the carers we spoke with had poor health literacy
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. Our research strongly
suggests that services need to be designed so that people are easily able to access them;
otherwise they will perpetuate exclusion and poor uptake especially amongst older
CALD carers and care recipients. As such, we propose an outreach in-home culturally
specific service model with an emphasis on ageing well and staying at home for the
dyad. The model of culturally-appropriate service provision is a model of care which
emphasises relationships and community and seeks to build social and cultural capital. It
is not about service provision in the first instance; rather it is about maintaining and
developing mutual support networks. This clearly supports the National Health Priority
of ageing well and ageing in place.
Key Findings
Our research findings are organised through the following five main themes. Each theme
and sub theme is discussed in detail in the full report.
1. Caring gives value, meaning and purpose in life
a. Caring can be burdensome but is not necessarily so
b. Juggling multiple roles
a. Competence in caring is not defined by gender
b. Slippage between who is caring for who
c. The dyad is central – moving beyond individual clients
d. The importance of remaining independent
2. Decision making is not all it seems
a. Decision making patterns remain the same
b. Role of family
c. Role of faith/church
d. Role of health professionals
e. Planning for the future
3. Formal and informal supports are used by carers
a. Influence of culture on help seeking
b. The need for culturally specific services
c. Service provider language can be disempowering and inappropriate
4. The social isolation paradox
a. Can increase during caring
b. Can increase when caring ceases
c. Not all carers experience social isolation, but some do
5. Towards an innovative model of service provision
a. Greek speaking research assistant and the impact on knowledge and
utilisation of services
b. Importance of communicating in one’s own language
c. Building rapport with CALD participants in a research setting
d. Role of bilingual/bicultural case worker
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Following Nutbeam’s (2008) public health perspective, health literacy is an outcome of health
education and communication. People with high levels of health literacy have context specific
knowledge and the ability to put that knowledge into practice in ways which enable control over
their health and health-related decisions.

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Recommendations
1. Reorient service provision and language used by services to encourage people to
use services and avoid institutional care. This could best be achieved by:
a. Focussing on the couple, or the dyad, who are embedded in
relationships with each other, their families, their neighbourhoods and
communities. This could include building a relationship between the
service provider network and the dyad that allows for an open dialogue
on needs and wants.
b. Supporting carers to continue to love and care for their spouse at home.
To achieve this providers must recognise that the services that they
offer, presented as relieving people of perceived burden, could take
away meaning in carers’ lives.
c. Focussing on providing support progressively which, in the first instance,
might be more related to being frail rather than the role of carer, that is,
help with gardening and cleaning as opposed to respite care for
example.
d. Recognising that duty does not necessarily have negative implications or
is a burden. Duty for the participants of this research is bound up with
feelings of love, care, mutual respect, and responsibility for a partner, in
the context of marriage.
2. Develop skills to identify and build respect for the decision making/planning
processes used by carers and their spouses. This would include:
a. Providing the right services at the right time rather than insisting on the
acceptance of services at a time that does not meet client needs.
b. Working against general assumptions (stereotypes) about how Greek
people make decisions. Focus group discussion suggested that service
providers believed that the Greek population make decisions as a family
group, often with the son being the primary decision maker. Our data
did not support this.
c. Acknowledging existing decision making patterns within the family/dyad
as these tend to continue during caring.
d. Most participants in the research placed a great deal of weight on
formal health professionals especially people from hospitals and
General Practitioners (GPs). There is a great deal of scope for GPs to
take a more active role in helping carers seek and accept help.
e. Building cultural competence within mainstream services in terms of
working with CALD carers. This includes understanding the caring role in
different cultures and what it contributes to people’s lives, and
respecting the love stories of couples.

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3. Utilise trusted community organisations with a community development
orientation to maintain an ongoing relationship with the caring dyad so that
service responses can be put in place progressively and health literacy
developed as an ongoing process. A linguistically and culturally-appropriate
outreach in home service with an emphasis on ageing well and staying at
home for the dyad is recommended. The key features of such a service could
include:
a. At least 2-3 face to face interviews per year with follow-up phone calls
at 6 weekly intervals. The combination of regular contact and an in-
depth understanding of specific situations through face to face
interviews in the home demonstrably provide opportunities for
increasing access to services/support in a timely manner.
b. Contact provided by someone who shares their language and culture
and has a good knowledge of regional service provision and support.
c. Interviews aim to develop a relationship and understanding of the carer
and care recipient by asking how can we support them to keep doing
what they value? Aim of providing support is to enable people to live as
independently as possible and maintain self-care.
d. Uses a different type of language. Service provider language can be
disempowering, e.g. care recipient, need help, graduate carer/care
leavers, burden of care, hidden carers. Carers spoke of love, respect,
togetherness and duty. The research assistant in exploring their caring
narratives engaged with the dyad using the language used about caring
by the dyad, not the service provider.
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The research was funded by the University of Western Sydney, the St George Migrant
Resource Centre, Multicultural Health Service South Eastern Sydney Local Health District
and the University of New South Wales.
This study was approved by: University of Western Sydney Human Research Ethics
Committee, the South Eastern Sydney Local Health District – Northern Sector Human
Research Ethics Committee and the Calvary Health Care Sydney Research & Ethics
Committee.
A full copy of the Report can be obtained by contacting either:
Penny Antonopoulos pennya@sgmrc.org.au
Manager CALD Community Care Program; St George Migrant Resource Centre
P. O. BOX 381, ROCKDALE NSW 2216; T 02 9597 5455 I F 02 95673326
Debbie Horsfall d.horsfall@uws.edu.au School of Social Sciences and Psychology |
Penrith (Kingswood campus) | University of Western Sydney Locked Bag 1797 |
Penrith NSW 2751
Astrid Perry: Astrid.Perry@SESIAHS.HEALTH.NSW.GOV.AU