Australian Journal of Adult LearningVolume 57, Number 3, Nov.docx

Australian Journal of Adult Learning
Volume 57, Number 3, November 2017
Learning to live with chronic illness in later life:
Empowering myself
Alexandra Withnall
University of Warwick, UK
Type 2 Diabetes is both an incurable illness and a hidden
disability that
has reached epidemic proportions on a global scale. It has
obviously
spawned a huge clinical literature, but no scholarly accounts of
learning
to live with the illness on a daily basis from a feminist
perspective.
As an older woman, I have made use of a somewhat
controversial
autoethnographical approach to explore how far I consider
myself
empowered to live with, and manage this condition for the rest
of
my life. Self-management is an idea that is central to both the
United
Kingdom (UK) National Health Service (NHS) philosophy of
supporting
patient choice and within a feminist perspective on health care.
Learning
to identify, access and use the necessary resources to manage
my

condition suggests that there are regional differences within the
UK as to
how much practical care diabetes patients are offered or can
access. The
paternalistic nature of the health care team/patient relationship
appears
to militate against the concept of patient empowerment.
Keywords: diabetes, autoethnography, feminism, learning, self-
care,
lifestyle.
Learning to live with chronic illness in later life: Empowering
myself 475
Introduction
As awareness of ageing populations grows across the world,
enjoying a
sense of physical and mental well-being by remaining active in
society
and retaining independence for as long as possible have come to
be
seen as desirable aims. Adult educators have been especially
persuasive
in emphasising the importance of continuing to learn throughout
life
as an essential ingredient of healthy ageing. Indeed, there is
growing
international evidence that learning in later life offers a whole
range
of benefits not only to individual learners as they age but also
to their
families, their communities and to the societies in which they

live. Yet
we know that for many people, the later years can bring varying
degrees
of ill health and the chances of growing older in good health
vary greatly
between countries. From a European perspective, it is fortunate
that
most people can generally still expect a good standard of health
care in
later life. Nevertheless, poor health in later life can be
compounded by
isolation or increasing poverty as well as by inequalities in
accessing
good quality health care.
What is surprising is that those involved in researching or
facilitating
later life learning rarely contemplate their own ageing or
consider what
it might mean to be forced to live with an illness or disability as
they
grow older. Yet as people approach their later years, some
degree of
change in well-being is inevitable. Understanding the nature of
such
changes is important in helping to cope with the challenges of
daily life
and with maintaining an acceptable lifestyle with age as well as
enabling
researchers to gain an insight into the lives of some of the older
people
with whom they work. As an older woman living in the United
Kingdom
(UK) who was diagnosed with Type 2 diabetes ten years ago,
my aim in
this paper is to explore and reflect upon my own experience of

learning to
live with this incurable illness over a decade using an
autoethnographical
approach. Have I empowered myself to live with this condition
for the
rest of my life and could my personal experience be meaningful
for
others? In this context, I understand empowerment as the
ability to
identify, access and make use of the resources necessary to take
control
of my illness, an idea that is central both to the UK’s National
Health
Service (NHS) philosophy of supporting patient choice and
within a
feminist perspective on health care. My first aim is to offer a
new and
potentially valuable empirical resource since there are no
scholarly
accounts of learning to live with Type 2 diabetes from the
perspective of
476 Alexandra Withnall
an older woman. A second aim is to question whether the health
care that
older women with Type 2 diabetes currently receive is
appropriate; and
thirdly, to consider the possibility of making changes that might
make a
difference to the lives of older women who are grappling daily
with the
practicalities of this stressful illness and their families.

What is Type 2 diabetes?
Type 2 diabetes is both a chronic illness and a hidden disability.
It differs
from Type 1, an autoimmune disease which is the result of the
pancreas
being unable to produce sufficient insulin, a hormone that
regulates
blood sugar (glucose) levels. In Type 2, some insulin is
produced but
the body is unable to use it effectively. Type 2 accounts for the
majority
of people with diabetes and usually affects people over the age
of 40.
Over a long period, since high blood sugar levels can damage
tissues and
organs of the body it is necessary to keep these levels under
very tight
control to prevent serious complications. Dealing daily with an
incurable
condition can also lead to depression and there is emerging
evidence that
diabetes is a risk factor for dementia (Strachan, Reynolds,
Marioni &
Price, 2011) as well as increasing the risk of premature death.
The World
Health Organisation (WHO) points to the economic impact
diabetes can
have, not only on the individual, but also on families and on
health care
systems through increased medical costs (World Health
Organisation,
2016). It is also thought that one in two adults with Type 2
across the
world are undiagnosed (International Diabetes Federation,
2015).

In the UK, there are an estimated 4.5 million people living with
diabetes
(around 25 per cent of these are probably undiagnosed) and 90
per cent
of these have Type 2. Audits suggest that around 56 per cent of
all adults
with diabetes in the UK are men and 44 per cent are women. In
England
and Wales, the highest prevalence is seen in the 70-79-year age
group
(Diabetes UK, 2016). In Australia, diabetes is the greatest
challenge
facing the health system with around 1.7 million people affected
overall;
Type 2 is estimated to affect 85 per cent of these and numbers
are
growing (Diabetes Australia, 2015).
Increasing age, being overweight with an enlarged waist
circumference,
lack of exercise, having high blood pressure and a family
history of
diabetes are well-known risk factors and diabetes is more
prevalent
in people in certain ethnic groups. Although fewer women than
men
are affected by Type 2 diabetes, they are subject to some
additional
myself 477
risk factors and there are some differences in the way they

experience
the illness. There is also some evidence that complications are
worse
for women than for men due to a combination of factors but
with
differences in physiology likely to be involved (Gebel, 2011). I
have
therefore chosen here to focus particularly on women coping
with Type
2 diabetes although I acknowledge that some of the issues I
raise may be
also applicable to men.
Methodology
Although still subject to some criticism, the use of
autoethnography as a
legitimate and useful form of qualitative inquiry has grown
considerably
in recent years spawning a considerable literature. It is an
approach to
research that systematically describes and analyses personal
experience
in order to connect that experience to the broader social,
cultural and
perhaps political context (Ettorre, 2016). There are diverse
forms of
autoethnography, one of which is writing a personal narrative
(Ellis,
Adams & Bouchner, 2011). In the context of illness, this can
offer a
therapeutic experience for the author even if it sometimes
requires
uncomfortable personal disclosure. It can also be a tacit
invitation to
the reader to enter the writer’s world, to try to connect with

his/her
experiences and feelings (Méndez, 2013) and to reflect on the
wider
significance for their own lives. However, Chang (2016) is
especially
critical of descriptive illness self-narratives unless they also
critically
address wider issues as I will do here.
Another point that arises in writing an autoethnography is what
Ellis
(2007) calls relational ethics whereby researchers should
critically
reflect on their ethical responsibilities towards those who are
involved
in, or implicated in their research. In reflecting on my learning
journey,
I have not directly involved anyone who could be identified
although
I mention others with whom I have been in contact at some
point or
whose roles impinged upon and influenced my experiences in
some way.
Because it has not been possible to obtain informed consent or
to check
out my perceptions, I have ensured that no-one would have
cause to be
upset or angered by my interpretation of events even where I
have been
critical of some episodes in my journey.
Shortly after diagnosis, I kept a diary for a short time, recording
symptoms, my reactions to treatment and my feelings as I
adjusted to

a new identity as a diabetic. I have also re-examined my various
test
results over a ten-year period. I have participated in three very
different
but relevant educational courses concerned with chronic illness
as well
as two more informal local day events and recorded my
observations
and reactions to these learning experiences at the time. In
addition, I
have tried to keep myself informed through a considerable
amount of
reading around the subject, partly on-line but also through
membership
of the leading diabetes charity, Diabetes UK. Recently, I joined
a local
support group, which consists of people of all ages with both
types of
diabetes. Finally, I reflect critically on my experiences in
relation to the
care that older women with diabetes can expect in the UK.
A learning journey
Reactions to diagnosis
My story begins from the point when I received the diagnosis of
Type 2
diabetes following an oral glucose tolerance test carried out by
a doctor.
My immediate reaction was a mixture of shock and a degree of
relief
that there was a genuine explanation for why I had been feeling

vaguely
unwell for several months. Yet inwardly, I was not altogether
surprised
since both my parents had been diabetic in later life. I therefore
assumed there must be a strong genetic factor in my diagnosis
but there
was also a lingering sense of guilt that perhaps I had brought
this on
myself through an unsuitable diet and lack of exercise.
In the UK, all health care is free at the point of delivery in
accordance
with the principles of the NHS and people over 60 years of age
are
entitled to free prescriptions and medication. I was immediately
prescribed an oral diabetes medicine that is used to help control
blood
sugar levels and additional medication to lower cholesterol and
to treat
high blood pressure. The only advice I was given at that point
was to
eat a balanced diet, to see an optician and to return in three
months
for a blood test. Later conversations with other women with
diabetes
confirmed that information at the point of diagnosis is often
sparse,
there is little opportunity to ask questions and the chances of
referral to
a dietician vary considerably according to location. At the time,
I worked
in a Medical School where some clinical colleagues had long-
standing
research interests in aspects of diabetes so I was fortunate in
being able
to ask informally for advice and to receive comforting

reassurance.
myself 479
Despite this support, the early months were a period of very
difficult
adjustment to my new identity as a diabetic. Apart from the
need
to remember to take medication several times a day, the
emotions I
experienced were akin to the stages of bereavement identified
by Kübler-
Ross (1970) as I came to terms with the loss of a previously
healthy
body. Shock gave way to denial. It surely must have been a
misdiagnosis
and I would shortly be told that it was all a mistake, apparently
a
very common reaction (Becker, 2015). Inwardly though, I knew
it to
be true and I found myself almost paralysed with fear as I read
more
about the dire consequences of failing to eat a healthy diet,
exercising
regularly and adhering to prescribed medicine as well as the
possibility
of premature death. This fear rapidly morphed into anger that
this
affliction had been visited on me. I felt resentful and cheated, a
reaction
I have since learnt is also quite normal both following a
bereavement
and on receiving a diagnosis of a serious illness. This was

nevertheless a
difficult and confusing period not helped by additional stresses
at work
combined with increasing family responsibilities.
Making changes
As identified in the ‘stages’ of bereavement, I eventually
reached a point
of calmer acceptance that life had changed for good and this
was the
beginning of being able to establish a degree of control. I
recognised
that I was at the start of a lifelong journey which would involve
a
degree of active planning and self-directed learning (Tough,
1971)
although this is a multi-faceted notion. Through information
leaflets
produced by Diabetes UK, I learnt that, although the key to my
care
was self-management, I could expect support from a multi-
disciplinary
care team with me as the ‘expert’ patient. However, this is not a
team
‘sitting around a table discussing your case’ (Becker,
2015:2759). These
professionals rarely communicate directly with each other and it
is the
patient’s task to contact them individually to undergo the
recommended
health checks at regular intervals. Although I always requested
copies of
my test results, some aspects of these were not always
comprehensible
to the lay person and health professionals rarely have time to

explain
them, a fact which militates against effective self-care.
All diabetics, whether Type 1 or 2, must make considerable
lifestyle
changes. For me, this was the most difficult aspect of control
and
involved some challenging experimentation over a long period.
Initially, since almost every type of food affects blood glucose
in some
way with carbohydrates the main culprit, an initial task was to
learn
more about the content of foodstuffs. For some time, I was
almost
afraid to eat anything but eventually, I settled on a diet based
around
an eating plan that involved only modest quantities of fat and
cereal
foods. Nevertheless, it was sometimes difficult to maintain such
a diet
especially when visiting friends for a meal; some of the
optimum foods
also tended to be expensive. At this point, I found the dietary
advice
provided on-line by Diabetes UK to be helpful.
The other key to self-management is to increase exercise levels
although,
like many older women, I had very little time and no idea what
kind of
exercise would be most beneficial. After I retired from full-time

work,
I discovered the GP (General Practitioner) Referral Programme
which
enables people with chronic illnesses in some areas of the UK to
join
a local gym and to be offered a 12-week course of exercise
suitable for
their individual level of fitness devised and monitored by a
trained
professional. Although this was not free, it was good for
motivation
and it encouraged me to join the gym after the programme was
over. I
also began to participate in an NHS-funded weekly health walk
with a
trained leader in charge. Such walks have been shown to be
beneficial
to participants in terms not just of maintenance of physical
activity but
also with respect to increased opportunity for regular social
contact
(Dawson, Boller, Foster & Hillsdon, 2006).
Non-formal educational programmes
Diabetes UK recommends that everyone newly diagnosed with
diabetes
should be offered the opportunity to attend an appropriate group
diabetes education course but this was unavailable locally.
However,
I took part in a local Expert Patients course which is aimed at
anyone
who is learning to cope with a chronic illness. Again, the basic
premise
is that the patient is an expert on their condition and they can be
trained

to take the lead on managing this, thereby improving their
health
and quality of life. At the time, the programme was a central
element
of chronic disease management policy in the UK,
enthusiastically
promoted by the Department of Health as a new and cost-
effective
approach (Department of Health, 2001).
A free course, it was based on a programme pioneered in the
USA with
reference to work on social learning theory and was originally
devised
myself 481
for people living with arthritis (Expert Patients Programme
Community
Interest Company, 2007). It consisted of a weekly small group
meeting
over six consecutive weeks facilitated by two specially trained
peer tutors.
The course dealt with various aspects of daily living but there
was also
considerable emphasis on learning to set personal goals and
developing
problem-solving skills. There were equal numbers of men and
women
students, all retired, and it was clarified at the outset that the
format
would be small group discussion and group exercises. This did
not sit

well with some of the participants and a few did not return after
the first
week suggesting what Crowther (2000), writing from a critical
theory
perspective, terms an act of resistance to educational
participation.
Of those who did return, it was apparent that many of the
women
particularly struggled with the format, lacked confidence in
speaking
in public and were reluctant to discuss personal issues with
strangers
despite encouragement from the facilitators. Personally,
although I
initially found the course quite helpful as a tool for self-
management,
I did not retain what I had learnt for very long and, lacking
further
support, largely failed to put the ideas into practice in the long
term.
What seemed to work better were two separate Saturday day
courses
specifically focusing on diabetes organised by the (former)
local Primary
Health Care Trust in conjunction with Diabetes UK. Free to
attend, these
courses were very informally run and consisted of short talks by
health
and exercise professionals on often neglected aspects of
diabetes care
such as choosing appropriate footwear. On both days, there was
plenty of
time for questions and some practical small group activities plus
a helpful
selection of written resources to take away as well as a healthy

lunch.
Most of the participants were older women and conversation
about
personal experiences of living with diabetes flowed much more
freely
than in the more formally structured course previously
described. Sadly,
such events are, in 2017, held less frequently, if at all,
presumably due to
severe cuts to NHS budgets. This is unfortunate since there is
evidence
from a Scandinavian study that diabetic patients who are
encouraged to
share their knowledge and experiences with facilitators in an
atmosphere
characterised by trust and good communication are more likely
to
understand that they can exercise a degree of control over their
illness
(Adolfsson, Starrin, Smide & Wikblad, 2008).
Later, I undertook a two-week MOOC (massive open on-line
course)
concerned with developing a patient-centred approach to
diabetes
and attracting what appeared to be a huge range of participants
from all over the world. There is now an emerging body of
research
on MOOCs generally and it is thought that across the globe,
many
thousands of older people take part in a range of courses on a

variety of
different platforms and in different languages. However, there
is still
a comparatively low level of research into understanding how
older
learners fare with such courses (Liyanagunawardena &
Williams, 2016).
Accordingly, although there was a very high level of reaction to
the
course material on-line it was not always clear how old
participants were
unless they chose to disclose this. Whilst women did seem much
more
comfortable with expressing their views here, MOOCs students
need
to be already competent and confident computer users and
possess a
good degree of literacy as well as a willingness to debate with
strangers
on-line. Some of the women participants stressed that they were
undertaking the course on behalf of a spouse or male partner
who had
recently been diagnosed as diabetic. These women were keen to
learn
how to keep their partners in good health by overseeing their
diets and
accompanying them to check-ups. In this way, they may have
become
an important resource for their partner’s own learning journey;
or
was there an underlying assumption that men are incapable of
taking
responsibility for their own health?
The study materials and the readings incorporated into the
course

seemed popular with participants but there were some areas of
disagreement that led to considerable on-line debate. The first
of
these related to whether Type 2 diabetics should regularly test
their
glucose levels to establish which kinds of foods were affecting
them.
On-line debate about this issue was intense and combative in
tone. The
second area of controversy emerged in very heated discussion of
recent
research which suggested that Type 2 diabetes can be reversed
(but
not cured) through the adoption of a very restricted low
carbohydrate
high fat (LCHF) diet (Taylor, 2013). Many of the on-line
participants
testified to the efficacy of the diet but others questioned its
validity since
it contradicted much of the traditional dietary advice that has
been
dispensed by clinicians in recent years.
I recently undertook a second short MOOC concerned with
living well
with diabetes with the emphasis being on maintaining health
and
wellness from a holistic perspective. As before, participants
came from
all over the world and the sharing of stories about the
challenges faced
myself 483

and differing cultural expectations was a major feature and
provided
a key learning resource. Discussion here contrasted sharply with
the
forceful nature of debate experienced in the previous MOOC
which I had
found somewhat intimidating.
Reflective analysis
After ten years then, I have learnt that acceptance is an
important part
of empowerment in this context followed by an understanding
that it
is my responsibility to increase my knowledge of the effect of
diabetes
and to keep abreast of new developments through the
identification
of trustworthy sources of information. Having also benefited
from
discussions with a variety of other people with diabetes from all
over
the world and with health professionals both face-to-face and
on-line,
I have improved my ability to more confidently self-manage and
to
interact with, and sometimes challenge members of my care
team. I will
continue to update my knowledge and to learn from others’
experiences
as well as seeking to evaluate new advice. This is particularly
important
since my condition is likely to worsen with age.
In reflecting critically on my overall experience, it is worth

noting that
Greenhalgh (2009) in a critique of the ways in which the whole
notion
of illness self-management and the ‘expert patient’ has evolved,
argues
strongly that the evidence base for these models is weak. She
advocates a
more holistic or social ecology approach in which chronic
illness is seen
‘as arising from the interplay of influences within a complex
system …
acting dynamically through time’ (Greenhalgh, 2009:630).
Accordingly,
she believes that there must be diversity of support provision
and that
local programmes should be organised more imaginatively to
meet
the very varied needs of different patients. However, the
patient must
remain an important member of the health care team since the
process
of agreeing on and implementing an appropriate care plan
should be
based on the negotiation of personal goals within the family,
social,
cultural and sometimes wider political context.
Greenhalgh (2009) makes an important and powerful case. But
what
can I extrapolate from my own story that will have relevance to
the
ways in which other older women can be helped to understand
and
to manage their illness? In the present UK climate where the
NHS is
subject to severe budgetary constraints it is an increasingly

difficult task.
However, a feminist approach to health care emphasises the
importance
of education for women in relation to a chronic condition
however this
is provided. To receive a personal diagnosis is a shock and
learning
to self-manage an incurable illness can be a lengthy,
bewildering and
exhausting process. Female spouses/partners of male diabetic
patients
could also be better helped to understand the ways in which
they
could best provide support. However, it appears that there are
some
differences within the UK as to how much information, practical
help
and care newly diagnosed diabetics or their relatives are offered
or
can access and, because of increased demands on the NHS, on-
going
personal support is often minimal. The charity Diabetes UK is a
useful
point of departure, especially through its website, telephone
helpline
and local support groups, but not everyone is aware of its
existence.
It would be helpful if health care professionals both in the UK
and
elsewhere recommended it as a major resource for the newly
diagnosed.

Another problem is the sometimes paternalistic nature of the
health
care team even when many team members are themselves
female.
Although the idea of a care team with the patient as the most
important
member with equal status is widely promoted, it appeared that
the health
professional-patient relationship still tends to be unbalanced. In
informal
discussions, several male patients also mentioned this.
However, it was
specifically some of the older women I encountered in the
courses in
which I participated who reported being reprimanded for failing
to adhere
to targets or having their concerns about possible side effects
from their
medication summarily dismissed rather than discussing and
agreeing care
plans as equals. In the UK, the NHS promotes various toolkits
to enable
health care professionals to enhance and develop skills and
competences
for diabetes care but it is important that these professionals
understand
that their attitudes can affect the quality of care they provide
(Liu,
Norman & While, 2012). Equally, older women need to learn
that active
involvement in their care and willingness to ask questions or to
challenge
decisions is similarly important. Since passivity and deference
can lead
to poor health outcomes, developing communication skills

should be
an educational priority for older women dealing with chronic
illness.
Briefly discussed in the Expert Patients course I attended, it
might cover
topics such as talking with health professionals, active
listening, gaining
the confidence to ask questions and clarifying answers (Expert
Patients
Programme Community Interest Company, 2007).
myself 485
Following Greenhalgh’s (2009) thinking, a further issue is the
need for
health professionals to acknowledge and understand the sheer
diversity
of older women’s lifestyles. This is especially pertinent with
respect to
nutrition since making dietary changes is a major aspect of
diabetes
self-management. However, difficulties in learning what
constitutes a
suitable diet is often compounded by confusing dietary advice.
Many
older women live alone which can make menu planning,
shopping
and cooking a problem especially if they are infirm or living on
a very
restricted income. In addition, the food practices of minority
ethnic
populations may vary greatly by age, geographic origin and
religion

(Chowbey & Harrop, 2016). They may have certain distinct
beliefs
about food, ways of cooking and eating preferences that current
advice
about diet in diabetes fails to address. Carr (2012) advocates a
series of
study days to help health care professionals to understand what
kinds
of foods their diabetic patients eat and why. In this way, they
would
be better equipped to help older women learn more about how
their
condition is likely to be affected by the foods they eat.
However, any
such interventions would obviously need to be culturally
sensitive and
to take any language and communication problems into account.
A
Canadian study provided preliminary evidence that individual
diabetes
education counselling in conjunction with group education on
nutrition
adherence was effective in helping a group of Portuguese
Canadians
shape their eating behaviour (Gucciardi, DeMelo, Lee & Grace,
2007). In
a similar way, it would be helpful if health professionals were
trained to
help older women choose and access appropriate exercise
programmes
since exercise plays such a crucial role in the control of Type 2
diabetes
and related health complications. There is some clinical
evidence
that women may need different types of exercise regimes from
men

(American Heart Association, 2015).
In respect of the availability of specific educational
programmes,
it is probably unrealistic to expect older women to participate
enthusiastically in a formally structured course if the format is
likely to
be unfamiliar or even threatening to them. More informal events
with
practical small group exercises and the availability of
professional advice
on coping on a day-to-day basis appeared to offer a more
acceptable
way of engaging older women and encouraging their
participation.
Additionally, the potential of MOOCs to offer short, focused
courses
that engage learners from all over the world who want to learn
more
about diabetes and exchange experiences seems promising.
However,
emerging research has already established that such courses
tend to
have low completion rates and that the format may prove
challenging
(Department for Business, Innovation & Skills, 2013). If ways
could
be developed in which to clarify learner expectations and
support on-
line discussion more effectively (Ferguson, Coughlan,
Herodotou &

Scanlan, 2017), short, learner friendly MOOCs could be a useful
form of
engagement for those seeking support. As more women move
into later
life with well-developed computer skills, fears about on-line
learning
should slowly be overcome and it could provide a useful way
forward in
helping women (and men) to understand and cope with their
condition.
Overall, the original work of Lave and Wenger (1991) and the
ideas
subsequently developed by Wenger (1998) suggest that female
diabetics,
however they are learning to manage their condition, can form a
community of practice where they continually create and re-
create their
shared identity through becoming active in, and contributing to
the
practices of that community. This might be at a local level
following a
short educational course, through membership of a support
group or
on a global scale through participation in an appropriate MOOC.
Since
every woman dealing with Type 2 diabetes has an individual
history, their
shared expertise might offer a valuable networked resource for
those newly
diagnosed or struggling with self-management – a form of
social capital.
Concluding remarks: The value of an autoethnographical
approach

Presenting a personal narrative concerning my experience of
learning
how to manage a diagnosis of Type 2 diabetes has been
beneficial to me
in that I have been able to publicly and critically reflect on an
aspect
of my life that impinges on my identity as an older woman but
which,
like many other people, I have hitherto kept within the private
sphere.
Richards (2009) discusses the rendering of people living with
illness
as outside the norm and comments that often, they tend to write
in a
manner that simplifies and objectifies their experiences. As both
the
researcher and the focus of my own research, I have tried to
avoid this
trap by exploring some of the wider issues that my personal
learning
journey has revealed. However, constructing my story has
raised further
questions for me such as how I have chosen to present myself to
the
reader, what I may have unconsciously omitted from my account
and
the nature of memory (Muncey, 2010) that I will continue to
explore.
myself 487
An unexpected outcome of constructing my story has been that I
have also

begun to question how older women in some of the Asian and
Western
Pacific countries where diabetes has reached epidemic
proportions cope
with a diagnosis. For the many older women where poverty,
lack of
education and other social, cultural and economic barriers may
prevent
access to good quality health care, how might they also be
empowered to
take control of their illness? If we are to make progress in
controlling this
life threatening disease their stories also need to be heard.
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About the Author
Alexandra Withnall is an Associate Fellow in the Centre for
Lifelong
Learning at the University of Warwick, UK. Prior to retirement,
she
was an Associate Professor in Lifelong Learning and Health in
Warwick
Medical School. She has published extensively on issues
relating to later
life learning and has given invited lectures in countries across
the world
including in Europe, Australia, Israel, South Africa and most
recently,

Taiwan.
Contact details
Centre for Lifelong Learning
University of Warwick
CV4 7AL
England, UK
Email: [email protected]
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Not Just another Long Term Chronic Illness —
Social Work and HIV in Ireland

Maeve Foreman & Neans Ní Rathaille
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Not Just another Long Term Chronic
Illness — Social Work and HIV in Ireland
Maeve Foreman and Neans Nı́ Rathaille
This article begins with an overview of the involvement of Irish
social workers
in the HIV sector over the past 30 years, describing the
culturally specific con-
text within which they worked. Drawing on the authors’
experience of social
work in the area, and on findings from a study conducted with
social workers
and people living with HIV, a shared perspective on the
challenges facing
those living with and working with HIV in Ireland is presented.
Despite the fact
that HIV is now considered a treatable long-term chronic
illness, it is
suggested that stigma and discrimination, and resulting fears
around
disclosure, remain key barriers to effective care and prevention.
The
contribution that social workers can make to support those
living with HIV and
to challenge such stigma is discussed.
Keywords: HIV; AIDS; social work; medical social work;
Ireland
Introduction

The global challenge of HIV continues, with 35 million people
infected
worldwide, the majority in the developing world (UNAIDS
2014). In Ireland,
with a population of 4.6 million (CSO 2014), the number
diagnosed with HIV
has doubled in the past decade and the cumulative total is now
7353. While
the number infected appears low, the rate per 100,000 people is
8.2,
compared to an average of 5.7 in the rest of Western Europe
(HPSC 2015).
Throughout the nineties, inward migration to Ireland from areas
of the world
where HIV is endemic contributed to an increase in the
detection of heterosex-
ually acquired HIV, accounting for well over 50% of infections
for much of the
last decade (HPSC 2015).1 However, mirroring the wider
European pattern
(ECDC 2010), men who have sex with men (MSM) has more
recently emerged as
one of the key population groups at greater risk of acquiring
HIV. In 2014, 49%
1. The Irish Nationality and Citizenship Act (2004) tightened
citizenship laws, reducing the number
of immigrants from Sub-Saharan Africa accessing HIV services
from then onwards.

� 2015 British Association of Social Workers
http://dx.doi.org/10.1080/09503153.2015.1087494
PRACTICE: SOCIAL WORK IN ACTION VOLUME 28
NUMBER 2 (APRIL 2016), 97–114
http://dx.doi.org/10.1080/09503153.2015.1087494
(183) of new diagnoses of HIV were among MSM, the highest
ever reported in
this group, with a threefold increase among MSM since 2005
(HPSC 2015).
Additionally, in the European MSM Internet Survey (EMIS),
which included the
largest ever survey of Irish gay men, 10% of those who had
tested were HIV
positive (The EMIS Network 2013).
While there have been advances in treatment since the first
dedicated HIV
service was established in Ireland in 1987, HIV remains more
than a medical
issue and continues to raise fundamental questions of equity
between margina-
lised groups and majority society, and between regions of the
world. Attempts
to ‘normalise’ HIV and see it as just another long-term chronic
treatable illness
have been criticised because of the ongoing stigma attached to
the disease,
the difficulties many experience accessing treatment or adhering

to compli-
cated treatment regimes, and the fact that for many it is still a
terminal con-
dition (UNAIDS 2014). We were interested in exploring
whether there was still
a need for specialised support, or can HIV be treated like other
manageable
long-term illnesses requiring ongoing medication?
Beginning with an historical overview and exploration of the
role of social
work in HIV service provision in Ireland, this article will go on
to present some
of the results of focus groups with HIV social workers and
people living with
HIV and, in the light of literature reviewed, suggest some of the
issues social
workers need to engage with today.
Historical and Cultural Context
The first cases of acquired immunodeficiency syndrome (AIDS)
in Ireland were
diagnosed in 1982 (HPSC 2015) and following the introduction
of the HIV test
in 1985 the full extent of the problem unfolded. By then, 60%
of those testing
HIV positive were intravenous drug users (IDUs) from Dublin’s
socially and
economically deprived inner city, with the gay community and
men with

haemophilia also initially affected. The high number of families
with two or
more siblings infected with HIV was a feature shared with other
European
cities with a high incidence of HIV positive IDUs (Bury,
Morrison, and
MacLachlan 1992), as was the number of women and children
infected (Butler
and Woods 1992; Foreman and Mulcahy 1997). This was due in
part to
restricted availability of drug treatment and the lack of needle
exchange.
There was no national drug policy and the debate was polarised
between absti-
nence and harm reduction (Butler and Mayock 2005; Cronin
1989). The Irish
experience contrasted with most of Europe where 70% of
reported HIV cases
were gay men (NASC 1992). Many IDUs were already receiving
social work ser-
vices through child and family teams, addiction or probation
services. Often
HIV was not their most immediate problem and issues related to
poverty,
addiction and childcare took precedence (Murphy Lawless and
Redmond 1993).
By 1999, the incidence of HIV among IDUs had fallen
dramatically as drug users
availed of harm reduction initiatives including methadone

treatment and
98 FOREMAN AND NÍ RATHAILLE
needle exchange (Seery 1999). Only 7% (27) of new infections
in Ireland in
2014 were among IDUs (HPSC 2015), although it is important
to note that this
is up from 5% in 2013 and is the highest number reported in this
group since
2009; 89% were co-infected with Hepatitis C, which remains a
huge issue.
Until recently, Catholic moral values were central to Irish
culture and were
enshrined in the laws of the state (Inglis 1998). This impacted
on the initial
development of AIDS policy and HIV education and prevention
interventions, as
well as on shaping public perception of HIV and those who
were affected
(Smyth 1998). Contraceptive devices, including condoms, were
only available
to married couples on prescription for family planning purposes.
The Health
(Family Planning) Act 1979 was amended in 1985 to allow
restricted sale of
condoms to adults over 18 in chemists and doctors’ surgeries,
but it was 1993

before the sale of condoms was deregulated and their
availability became
more widespread (IFPA 2014). Attempts to introduce sex
education in schools
were often challenged until the eventual, but problematic,
introduction of
Relationship and Sexuality Education in 1998 (Mayock,
Kitching, and Morgan
2006). Until 1992, it was illegal to give information and advice
to women seek-
ing a termination (IFPA 2014), although medical opinion at the
time considered
it risky for HIV positive women to proceed with pregnancies
(Berridge 1996).
Additionally, it was difficult for statutory health services to
target gay men as
sex between men was illegal, and gay men could not be open
about their sexu-
ality. The Criminal Law Sexual Offences Act 1993 eventually
decriminalised
homosexual acts, making 17 the age of consent for all, but in
the meantime,
the gay community and non-governmental organisations led the
response to
AIDS. Gay Health Action, founded in 1985, produced the first
safer sex leaflet
and helped found organisations such as Cairde, a befriending
agency, and AIDS
Action Alliance; and the Irish AIDS Initiative Conference, an
all Ireland

response lead by people living with HIV, resulted in the
establishment in 1988
of an AIDS Liaison Forum2 for those working with, and
affected by, HIV. Social
workers were involved in the Forum from the start. Since then,
Ireland has
become a more secular society. Although Irish women still have
to travel
abroad for terminations (Bacik 2013), condoms are now
available (IFPA 2014),
civil partnership was introduced for gay couples in 2011 (GLEN
2014), the
recent Marriage Equality Referendum made Ireland the first
country in the
world to support legalising same sex marriage by popular vote
(Yes Equality
2015), and Gay Health Network (GHN) and the Health Service
Executive con-
tinue to jointly run a national HIV Prevention and Sexual
Health Awareness
programme targeting MSM (GHN 2014).
2. ALF’S goal was ‘to foster excellence in service provision
through open sharing and discussion …
and to promote better networking, cooperation and skills
development throughout the HIV/AIDS
Field’ (ALF, 1993). The Forum also published a newsletter,
AIDS Inform, from 1989 to 1994, and
was replaced by the HIV Services Network in 1999.
SOCIAL WORK AND HIV IN IRELAND 99

Social Work and HIV
Since the early eighties, social workers in hospitals, community
care,
probation, fostering and addiction services have worked with
people diagnosed
with HIV and dying from AIDS (Foreman 1988; Jones and
Foley 2002; Travers
1996). The profession’s pre-existing principles such as
acceptance and non-
judgmental attitude, commitment to social justice, and
strengths-based and
anti-oppressive practice approaches were ideally suited to this
work (Linsk
2011). From 1989 onwards, social workers in Ireland were
appointed to hospi-
tal-based HIV counsellor posts to support those diagnosed with
HIV, with the
first two posts in the National Haemophilia Centre and a
hospital-based HIV
service (Lindsay 2002). Their role included the provision of
pre- and post-HIV
test counselling (Foreman et al. 1992) and ongoing psychosocial
support. This
included making care plans with families living with AIDS,
supporting those
dying from AIDS to live in their community for as long as
possible, developing a

planned response for those coping with AIDS dementia, running
support groups,
providing bereavement support and promoting behaviour change
to safer prac-
tices. Social workers also attended to issues such as housing,
finance and
guardianship of children (Foreman and Mulcahy 1997).
The Irish Association of Social Workers’ special interest group
in HIV was
established in 1989 (IASW 1992). In an early initiative,
members worked with
HIV positive parents to produce a book for children infected
and affected by
HIV (Fitzgerald 1992). At a broader level, several initiatives in
the late eighties
by groups like the IASW and the AIDS Liaison Forum
challenged the govern-
ment’s lack of action in tackling the growing problem of HIV.
Calls for a broad-
based national interdisciplinary body to manage AIDS care
culminated in the
establishment of the National AIDS Strategy Committee
(NASC).3 Social workers
have sat on the committee from the outset. NASC reported
twice, in 1992 and
in 2000 and recognised that the most effective way to deliver
services was a
coordinated civil society and statutory intersectoral approach.
The 2000 Strat-

egy guides current policy on HIV but NASC has not, despite
recommendations
to the contrary, engaged in broader sexual health policy (ECDC
2010; Layte
et al. 2006). Its sub-committees have been more active and have
advanced
policy and practice in education, prevention, care and
management of HIV
(NASC, 2005, 2011).
Working relationships were established by social workers with
self-advocacy
and peer support groups such as Body Positive and Irish
Frontliners,4 non-gov-
ernmental HIV/AIDS organisations, community drug projects,
HIV Services and
the GHN. Examples of collaborative practice include the
provision of HIV
3. NASC was launched at a ‘Sharing the Challenge’ conference
in 1991, which had been jointly
organised by civil society and the Department of Health.
4. Irish Frontliners’ magazine Frontline, produced in 1989/1990
provides a record of the devasta-
tion caused by AIDS, and the early activism of the self-
advocacy movement.
awareness training by hospital social workers with GLEN’s Gay
HIV Strategies

and the Gay Men’s Health Service (a statutory community
service managed by
a social worker) in gay clubs and saunas in Dublin (Hayden
1998); provision of
late night testing and counselling in gay pubs, clubs and saunas
following an
outbreak of syphilis (Gay Men’s Health Service 2011) and
outreach with com-
munity drug workers to prevent further infections among young
IDUs following
an increase in HIV in an inner city area (Clarke et al. 2001).
Social workers also
took part in the National Stamp Out Stigma Campaign 2007–
2008. More
recently, the IASW collaborated with GLEN to produce a
handbook on social
work and LGBT issues (IASW 2011).
Today, despite medical advances, individual decisions to change
risk beha-
viours remain the most viable way to prevent HIV infection
(UNAIDS 2014), and
the importance of developing prevention interventions with
people who are
HIV positive has been highlighted (Collins and Sheehan 2005;
WHO 2011). The
introduction of routine HIV testing in sexually transmitted
infection and ante-
natal clinics has led to a change in services being provided by

social work-
ers/counsellors, who now concentrate on working with those
who are at high
risk or who have a multitude of problems (NASC 2000).
Living with HIV in Ireland: Methodology
We set out to explore the impact of developments in HIV
treatments and the
conceptualisation of HIV infection as a treatable chronic illness
on those living
with HIV in Ireland. Locating our qualitative study in an
interpretivist paradigm
and employing purposive sampling, we conducted two focus
groups with fifteen
members of Irish support organisations for people living with
HIV. In all, nine
Irish men (five of whom were gay and four ex-IDU) and six
women (three of
whom were Irish, two Sub-Saharan Africans and one South
American) partici-
pated. The majority of the women had contracted the virus
heterosexually and
two women were ex-IDUs. Participants reflected the changing
demographics of
those affected by HIV in Ireland. Currently new diagnoses occur
most fre-
quently amongst young gay men, and infections among men now
outnumber
women three to one. In the 1980s drug users were the largest

group testing
positive whereas in the late 1990s and early 2000s heterosexual
women, in par-
ticular women from SSA, were the largest single group testing
positive. Partici-
pants self-selected following written approaches to the
organisations
concerned, and gave written consent to take part in the study.
As one of the
authors is currently a social worker in a clinic attended by some
of the partici-
pants, these focus groups were lead by the university-based
researcher. Ques-
tions asked to prompt discussion included ‘What is it like for
you now living
with HIV? What about relationships? What about support?’
In addition, we conducted two focus groups with nine social
workers and
counsellors who were members of the HIV counsellors’ group,
which has a
membership of approximately 15 social workers and addiction
counsellors, with
one representative on NASC. Participants’ views were sought
on past and
current psychosocial issues facing those living with HIV. Focus

groups were
held in May and June 2011, and all sessions were recorded,
transcribed, anal-
ysed for repeated themes and coded accordingly. A clear
limitation of the
study is that all participants were involved with peer support
organisations or
employed as HIV counsellors and therefore may represent a
particular perspec-
tive of those who have significant commitment and involvement
with HIV
issues. For example, a study of people living with HIV who are
not linked in
with HIV organisations may present a different picture of
stigma management
and HIV disclosure, and resulting experience of discrimination
(Poindexter and
Shippy 2010). Together with the small number of participants
this means that
the findings cannot be generalised to the wider population of
people living
with HIV. Additionally as the two researchers have a
background in HIV social
work, we were challenged to maintain a position of ‘not
knowing’ and avoid
inputting our own views on the topic.
Findings
There was consensus between social workers and those living

with HIV on four
dominant themes that emerged from an analysis of the data,
namely:
• Ongoing existence of stigma and discrimination
• Difficulties around disclosure of HIV status
• Continuing need for pre and post test counselling
• The role of peer support in building resilience and challenging
HIV stigma
These will be presented jointly below. Other issues raised by
participants
related to living longer with HIV across the lifespan, such as
how to have chil-
dren safely, coping with side effects of long term treatment, the
transition of
adolescents to adult HIV services, ageing with HIV and specific
issues facing
migrants within the asylum system and the homeless. These are
reported sepa-
rately (Foreman 2014; Foreman and Nı́ Rathaille 2013).
Ongoing Existence of Stigma and discrimination
Several participants talked about prejudice and stigma
experienced in online
chat rooms like Gaydar, mirroring the reported growth of HIV-
related stigma
within communities of gay men (Smit et al. 2012).
Oh yes well from a medical point of view obviously it’s moved

on a lot, but at
the same time I think the stigma to do with it hasn’t moved on
really … I’ve
told people who don’t know that I’m positive that, yes, I had
cancer in the
past, because it’s kind of acceptable, but HIV is not socially
acceptable (Person
living with HIV (PLWHIV))
Participants also thought that the public remains ignorant about
advances in
HIV treatment, and the newly diagnosed still react with shock
and worry that
they are going to die of AIDS.
It’s the same as it was in the 80’s and the 90’s. We’re aware of
the available
treatments, but the newly diagnosed are not … Those from Sub
Saharan coun-
tries still see it as a death sentence because that’s their
experience of HIV
(Social Worker (SW))
Participants argued that while treatments have improved, the
psychosocial
issues and social repercussions of a diagnosis have not,
although in some inner-
city communities this is not always the case.
It’s more openly spoke (about) and it’s more accepted in the

working class
community because when I was diagnosed every second
neighbour had a son, a
daughter (with HIV) so it was widely accepted there (PLWHIV)
In the past, people with HIV in Ireland have faced
discrimination in health care
services, in financial and insurance matters, in employment,
education and tra-
vel and by social exclusion (Murphy Lawless and Redmond
1993; O’Gorman
1999). Participants stressed that this remains an issue, citing
experiences of
discrimination within the health services, particularly being left
‘to the end of
the list’ by dentists and surgeons. People living with HIV raised
the need to
keep HIV alive in the public consciousness to tackle stigma and
discrimination.
They wanted HIV to be more visible, not just on Irish or World
AIDS Day.
It’s like this is the only time that it comes about you know, that
you will hear
stuff being done, you know, about the media wanting to do
interviews for
World AIDS day, or Irish AIDS Day, and after that then it’s
gone again ….
(what’s needed is) the same commitment every day, not just one
day a year,
then maybe something would change (PLWHIV).
Difficulties around Disclosure of HIV Status

All participants discussed the difficulties of disclosure to sexual
partners, for
example, one participant talked about the insults that she
endured when she
told a new partner of her diagnosis. People managed sexual
encounters differ-
ently with some telling all partners, casual or long-term, and
others believing
that you need to know that you can trust someone first.
If you didn’t tell the person from the beginning, what happens
like later on
when you decide to tell them, aren’t they going to feel betrayed
that you
never told them? (PLWHIV)
Earlier studies have shown that stigma and discrimination
within migrant com-
munities can prevent people disclosing their status and
accessing support
(Foreman 2008; Foreman and Hawthorne 2007), a point echoed
by one South
African female participant:
If you tell a friend, she’s going to tell another friend, and the
other friend is
going to tell another friend, and it keeps going and then they’ll

be saying ‘oh
she has AIDS, she has AIDS’ and that’s the stigma (PLWHIV)
In participants’ experience, the majority of parents do not tell
young children
of their own or their parents’ diagnosis, which can inhibit their
use of support
services. The toll of living with a parent with HIV, and of
keeping such a
secret, has been shown to place a heavy burden on children
(Cree and Sidhva
2011). While the national paediatric HIV team encourages
parents to tell posi-
tive children by the age of 12 parents are afraid to tell, afraid
the child will
blame them, echoing earlier accounts of difficulties around
disclosure to chil-
dren (Travers 1996).
The stigma and discrimination still affects parents, the secrecy,
they put a lot
of energy into keeping the diagnosis a secret from everyone, the
isolation …
we had one case where the other children in a school knew the
diagnosis and
the child with HIV was the last one to find out (SW)
Most clinics adopt a multidisciplinary approach if there is
concern about non-
disclosure to an unknowingly ‘at risk’ partner (UNAIDS/UNDP
2008), and follow
either the Irish guidelines drawn up by a social worker for

NASC (Jones 2001),
or British HIV Association guidelines (BHIVA 2008). Some
believed that there
was no need to tell partners if their virus load was undetectable
because of
evidence that HIV treatment greatly reduces the risk of
transmission (Lancet
2011), echoing studies that show a correlation between non-
disclosure and
those with ‘HIV health optimism’ (Murphy et al. 2015). To
date, there have
been no prosecutions in Ireland for sexual transmission of HIV,
although all
participants were aware of the increased criminalisation of HIV
transmission
and the growing number of prosecutions abroad (Bernard 2010).
Social workers
emphasised the fact that even where sexual partners were told,
risky beha-
viour can still take place because of the many contextual and
social factors
involved.
Continuing Need for Routine Pre and Post Test Counselling?
While post-test counselling is still routinely offered in the
majority of specialist
clinics, in some hospitals social workers said that they had seen
an erosion of
their role, with clients who are newly diagnosed with HIV no

longer being rou-
tinely referred, unless they reacted badly and clearly needed
support.
Post test counselling (is) only done if the doctor decides that
the person isn’t
responding well to the diagnosis and needs intervention (SW)
This mirrors concerns expressed elsewhere regarding the
depletion of the role
of the HIV specialist social worker (Cairns 2011), even though
specialist social
work support, peer support and counselling are regarded by
some health
professionals as the most beneficial interventions for those
living with HIV
(NAT 2011). Without routine referrals, social workers were
concerned that
mental health issues might not be picked up early and necessary
support work
around HIV prevention conducted. One social worker’s views
mirrored findings
of a recent UK study of specialised HIV services where social
workers com-
plained about getting referrals as a last resort (Pearmain 2011):
It’s frustrating if you get a late referral when the person is in

crisis, and have
to pick up the pieces, work with the client later. It’d be easier if
everyone was
referred when first diagnosed and known to the social worker
(SW)
Those who had been attending clinics for longer, in some cases
for up to 25
years reported that they had good relationships with social
workers. However,
some participants described getting little if any support when
told of their
diagnosis, particularly in outlying hospitals, which they stated
added to their
sense of stress, anxiety and isolation. Even where families were
aware and
supportive, the need for access to counselling and support was
expressed:
All my family know, but I don’t think they know what to ask,
they just ask how
are you doing? Same as anything else, like being gay, they
know, but they don’t
want to know and I don’t like to worry them (PLWHIV)
One man diagnosed in 2005 eventually sought counselling
through a non-
governmental organisation six years after diagnosis:
I never got counselling when I was diagnosed in the hospital.
No, so I had to go
and get a counsellor myself … it’s helped me ….I was just met
by the doctor

and he told me and that was it (PLWHIV)
Others want an allocated social worker and would welcome
mental health
checks at the same time as routine medical checkups. As one
person said that
it would be good to be asked on a regular basis by a social
worker or nurse
‘Well, and how are you?’
You see a different doctor every month, they open a file and
they start all over
again. Would you ever read the notes, a total pain in the arse.
But the social
worker it’s the same person who deals with you (PLWHIV)
Some multidisciplinary teams (MDT) within Irish HIV services
have expanded to
include clinical nurse specialists, and in some cases
psychologists and psychia-
trists, disciplines that were not much evident in the eighties.
While social
workers said that this enhanced the service, collaboration,
building relation-
ships and being assertive were all cited as key. It can create an
overlap or
blurring of boundaries with social workers no longer being
involved in helping
parents with disclosure to a child and feeling that their role has
been reduced
to more practical/social or child protection issues. As in other

studies
(Pearmain 2011), those social workers with offices sited in HIV
clinics and in
dedicated posts were more integrated into the MDT.
You have to be there. If they have to go looking for you, it’ll
impact on
accessibility and familiarity and how involved you are (SW)
The largest Irish HIV clinic currently has four social workers in
post as HIV
counsellors. The smaller consultant-led HIV clinics in hospitals
outside Dublin
do not have dedicated HIV social worker posts. While the
hospitals’ social work
departments can and do respond to any demands made on them
by clients with
HIV, they cannot offer the proactive service requested by HIV
positive partici-
pants in our study and available in larger centres (NASC 2005).
The Role of Peer Support in Building Resilience and
Challenging HIV
Stigma
In exploring what made a positive difference in their lives,
those living with
HIV identified some clear coping strategies. All participants
agreed on the

power of peer support, especially in addressing internalised
stigma.
I’ve been coming here (support agency) for a year and before
that I was oh
yeh it’s a manageable chronic disease and that’s kind of all I
thought about it,
I didn’t realise how much of a mess that I was because I
couldn’t tell anyone
and how much it was affecting me. I only realised that after I
came here, and I
was more open about it, I had totally pulled back from other
people (PLWHIV)
I think I get my biggest support from other people who are
positive … and
maybe over the years I don’t realise how supportive we’ve
actually been —
you can actually be yourself, you’re not careful about what
you’re saying, you
can just be one hundred percent yourself (PLWHIV)
The resilience of those living with HIV for 20 years or more
was particularly
striking. Those who had disclosed their status to at least some
family, friends
and partner appeared to cope well. Those who had accepted
their HIV status
as part of who they are and refused to be defined by it displayed
‘stigma resis-
tance’ (Poindexter and Shippy 2010).
Discussion: Just another Long-term Chronic Illness?

Despite the advances in medical treatment, our study indicates
that stigma
and discrimination remain ongoing challenges for people living
with HIV.
Although the majority of those interviewed who were living
long term with HIV
have adjusted well, some clearly continue to struggle with
disclosure and
resulting discrimination and those more recently diagnosed still
seek help with
adjusting to a stigmatising condition.
The impact is different to cancer, it’s not the same. It takes
longer to adjust,
because of the stigma and fears around disclosure, to partners,
to families
(SW)
Goffman (1963), who defined stigma as any attribute that
carries a negative
social identity, influenced early interventions to combat HIV
stigma (Herek
1999). However, Parker and Aggleton (2003) have argued that
Goffman’s
emphasis on stigma as an attribute rather than as a constantly
changing social

process has limited past interventions which aimed to increase
tolerance and
understanding of those living with HIV, and reduce fear and
anxiety by provid-
ing ‘correct’ information. They argue that Foucault’s (1978)
work more clearly
illustrates the cultural production of difference in the service of
power, and
suggest that an understanding of power, culture and social
inequality are
essential to properly combat HIV stigma, particularly when
marginalised or
socially excluded groups such as IDUs and MSM are affected.
Link and Phelan
suggest that stigma exists when ‘elements of labelling,
stereotyping, separat-
ing, status loss and discrimination co-occur in a power situation
that allows
these processes to unfold’ (2001, 382) and as a result any
approach to change
stigma must be multifaceted and multilevel.
The reasons for HIV related stigma, and the discrimination that
can follow
it, are clearly complex. While they can include a lack of
understanding about
HIV and its transmission they can also reflect prejudice, social
fears about sex-
uality, drug use, migration, illness and death as well as
irresponsible media

reporting (Parker and Aggleton 2003), and HIV discrimination
can be reinforced
by and dependent on racism, xenophobia, sexism and
homophobia (Dodds
2006).
Challenging Stigma
The Irish Stamp Out Stigma report on public attitudes and
personal experiences
of stigma found that people living with HIV experienced
significant levels of
stigma and discrimination from families, friends, at work, and
in accessing
health and social care services. Interestingly, those living with
HIV thought
that they were viewed more negatively by society than they
actually were
(Public Communication Centre 2008). Thus as Deacon (2006)
remarks, even
when there is no discrimination present, individuals may expect
to be discrimi-
nated against and become more withdrawn. Internalising stigma
can result in a
poorer quality of life, depression or lack of self-esteem,
preventing people
from testing, seeking treatment or disclosing their HIV status
(Jeffries et al.
2015).
Although it is accepted that stigma can be a major barrier to

effective HIV
prevention and care (ECDC 2010), HIV stigma reduction efforts
are often rele-
gated to the bottom of HIV programmes (Mahajan et al. 2008).
A review of Ire-
land’s HIV Education and Prevention Strategy was mixed.
While advances have
been made in several areas, with some action in relation to
awareness raising
and training on stigma and discrimination, implementation has
been limited
and patchy (NASC, 2011). Study participants called for more
awareness raising
campaigns and while there is no evidence to suggest that such
campaigns
change attitudes, they may contribute to change if they are part
of a larger
action plan with targeted projects, creating the right
environment for change
to take place (Parker and Aggleton 2003). Reidpath et al. (2005)
argue for the
development of strategies that will increase the social value of
those who are
stigmatised. Interventions which have been shown to prevent
stigma and

challenge discrimination include empowering those living with
and affected by
HIV through education, counselling and community
mobilisation to resist
stigma and discrimination and, adopting a rights-based approach
and support-
ing challenges to discrimination through existing laws (Deacon
2006). To date,
there has been two successful legal cases on the island of
Ireland. One case,
taken against a chiropodist who refused treatment to a person
with HIV, was
regarded as groundbreaking in tackling stigma and ensuring
access to health
services (Equality Authority 2009). In the other, a HIV positive
person
successfully sued a Northern Ireland hospital through the
Equality Commission
after he received less than optimum treatment because of his
HIV status
(McDonald 2009). Both cases confirm that as well as having
negative health
consequences stigma can result in the provision of services of a
lesser quality
(Reidpath et al. 2005).
To Tell or Not to Tell
Having control over if, how and when to tell others about one’s
HIV infection
is seen by many as one of the basic principles of a human rights

approach to
HIV (Dodds, Keogh, and Weatherburn 2004). The stigma and
discrimination
experienced or feared by study participants living with HIV
continues to impact
on whether they disclosed their HIV status to partners, families
or friends, mir-
roring Bravo et al.’s (2010) review which highlighted disclosure
as one of the
most difficult decisions facing people living with HIV. As well
as HIV health
optimism (Murphy et al. 2015) factors affecting non-disclosure
to partners are
known to include fear of relationship breakdown, of loss of
confidentiality and
of domestic violence (Nı́ Rathaille et al. 2004; WHO 2004).
Disclosure and con-
cealment of HIV status can have both positive and negative
consequences.
While disclosing to family and friends has been shown to be of
benefit, pro-
moting health, social support and psychological well-being
(Smith, Rossetto,
and Peterson 2008; WHO 2004), disclosure of HIV status to
partners, family or
friends has also resulted in rejection, abandonment and isolation
(Cairde 2004;
Doyal and Anderson 2005). In the EMIS survey of MSM, only
57% of Irish gay

men were ‘out’ about their sexuality, and 68% of Irish men
living with HIV
reported that they avoided telling others about their diagnosis.
Additionally,
over a quarter had been treated less favourably or had been
shunned or
avoided sexually when someone learnt that they had HIV (The
EMIS Network
2013). While the majority of those living with HIV in our study
manage stigma
by selectively disclosing, others openly disclose and refuse to
accept negating
images, thus resisting stigma (Poindexter and Shippy 2010).
Implications for Social Work Practice
‘Stigma, silence, discrimination and denial, as well as lack of
confidentiality,
undermine prevention, care and treatment efforts and increase
the impact of
the epidemic on individuals, communities and nations’ (United
Nations
2001:13)
People with HIV are living longer and the number of those
infected contin-
ues to grow. In Ireland, as in the rest of the Western world,
while there have

been many advances in HIV care, our small study indicated that
some of those
living with HIV still experience stigma and discrimination
which can impact
negatively on their mental health, affecting disclosure of their
HIV status to
family and sexual partners, and their ability to engage with
treatment regimes.
Similarly, BHIVA (2011) have reported that psychological
problems in people
with HIV have not reduced in line with medical problems. The
centrality of the
role of social work in supporting those infected with and
affected by HIV since
the late eighties has changed in that pre- and post-HIV test
counselling no
longer routinely occur. There is now a danger that in the rush to
normalise HIV
as a chronic treatable illness, people are being left on their own
to cope with
its broader psychosocial impact and many no longer feel cared
for. Social
workers need to ensure that stigma is addressed in assessments,
and should
advocate for continuing resources for psychosocial support for
those living with
HIV as they adjust to difficult life transitions. Additionally,
social workers who
understand the broader context within which people take risks

can be a power-
ful resource in HIV prevention. Despite medical advances such
as PrEP (pre-ex-
posure prophylaxis) and providing HIV treatment as prevention
(Lancet 2011),
it remains essential that those engaged in risky behaviours are
given the option
of counselling to allow for focused discussion on risk
behaviours. Social workers
can draw on existing frameworks to help clients make decisions
around disclo-
sure to future and existing sexual partners and their broader
social network
(Chaudoir and Fisher 2010; Serovich 2000).
The social workers in our study had good insight into the issues
facing those
living with HIV but their emphasis was on working with clients
and families.
Despite their membership of the HIV Services Network and
NASC, there was a
lack of discussion on engagement in wider policy issues such as
advocacy for
the implementation of the National Sexual Health Strategy
(Layte et al. 2006),
which is still in development. The freeze on public sector posts
in Ireland, cuts
in health service budgets and the increase in those being
diagnosed with HIV
and remaining well on treatment all impact on social workers’

time and their
ability to engage in wider policy issues. Adopting a human
rights approach
(UNAIDS and OHCHR 2007), social workers should strive to
share their knowl-
edge from practice and continue to work in partnership with
peer led HIV com-
munity-based organisations, to identify shared issues, lend
support to those
advocating to change discriminatory social policies and
challenge culturally
borne prejudices. With support, people living with HIV can
build ‘stigma
resistance’ (Poindexter and Shippy 2010) and in the process
shift responsibility
for addressing HIV stigma and resulting discrimination,
rejection and exclusion
to society as a whole (Link and Phelan 2001). Positive Now, an
all Ireland net-
work of people living with HIV which was established in 2010,
has highlighted
the shared responsibility of society, institutions and health care
professionals
as well as people living with HIV to challenge HIV-related
stigma and discrimi-

nation, and invites all of us to take part in a continuing
conversation about
these and other issues, ‘as equals beyond client-professional
relationships’
(Positive Now 2014, 24).
I’ve no problem with being who I am, because it is who I am, so
if I need to
tell someone and they reject me that’s not my problem, that’s
their problem
(PLWHIV).
Acknowledgements
Our thanks to all research participants who gave freely of their
time and
expertise to inform social work practice in this area.
Disclosure statement
No potential conflict of interest was reported by the authors.
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Maeve Foreman, Assistant Professor in Social Work, School of
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to: Maeve
Foreman, Assistant Professor in Social Work, Trinity College,
Dublin, Ireland.
Neans Nı́ Rathaille, Senior Medical Social Worker, St. James’s
Hospital, Dublin,
Ireland. Research interests: Medical social work, HIV, refugees
and asylum
seekers Selection of Articles: “Medical Social Work in Ireland:
An Exploration

of Service Users’ Perspectives,” Irish Social Worker (2015);
“Optimism, Com-
munity Attachment and Serostatus Disclosure among HIV-
Positive Men Who
Have Sex With Men,” AIDS Care (2015); “A Whole-Hospital
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(2008); “Bereavement
Support in an Acute Hospital: an Irish Model,” Death Studies
(2008); “Increas-
ing Social Work Students Awareness of Heterosexism - a
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Ethnic Minorities Accessing HIV Services in Ireland,” British
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Work (2007).
https://www.yesequality.ie/
https://www.yesequality.ie/
mailto:[email protected] Introduction Historical and Cultural
Context Social Work and HIV Living with HIV in Ireland:
Methodology Findings Ongoing Existence of Stigma and
discrimination Difficulties around Disclosure of HIV Status
Continuing Need for Routine Pre and Post Test Counselling?
The Role of Peer Support in Building Resilience and
Challenging HIV Stigma Discussion: Just another Long-term
Chronic Illness? Challenging Stigma To Tell or Not to Tell
Implications for Social Work PracticeAcknowledgements
Disclosure statementReferences
Journal of Social Work
2014, Vol 14(1) 83–95

! The Author(s) 2013
Reprints and permissions:
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DOI: 10.1177/1468017313475381
jsw.sagepub.com
Article
Social work practice in
the chronic care model:
Chronic illness and
disability care
Patricia A Findley
Rutgers University, New Brunswick, NJ, USA
Abstract
� Summary: Maintaining good quality of life and health in face
of living and/or aging with

a chronic illness and/or disability can be challenging. The
health care and related edu-
cation and training of these individuals to become proactive
partners in their ongoing
care is the cornerstone of most chronic care models.
� Findings: Social workers are not specifically mentioned in
most chronic care models.
However, as the health and social care processes can become
complicated if the indi-
vidual has barriers to partnering roles necessitated by chronic
care models, a role for
the social worker should be more clearly defined. Examination
and application of the
ecosystems perspective defines a clear role for social work to
work collaboratively with
other health professionals within a chronic care model.

� Application: This paper explores how social work’s
ecosystems model can interface
with Wagner’s Chronic Care Model to fill the void that some
individuals may experience
in seeking and maintaining care to provide a useful framework
to facilitate interventions
within that model.
Keywords
Social work, disability, chronic Illness, ecosystem, health care,
care coordination
Introduction
The number of individuals living with chronic illness in the
United States has
significantly risen over the past several decades as medical
science dramatically
increased its ability to extend lives with advances in medical
technology and

most recently through the implementation of chronic care
treatment models
Corresponding author:
Patricia A Findley, School of Social Work, Rutgers University,
536 George Street, New Brunswick, NJ 08901,
USA.
http://crossmark.crossref.org/dialog/?doi=10.1177%2F14680173
13475381&domain=pdf&date_stamp=2013-02-28
(Anderson, Herbert, Zeffiro, & Johnson, 2004; Bodenheimer,
Wagner, &
Grumbach, 2002a, 2002b; Glasgow, Orleans, & Wagner, 2001;
Lorig, Sobel, &
Stewart, 1999; Rothman & Wagner, 2003; Von Korff, Gruman,
Schaefer, Curry,
& Wagner, 1997; Wagner, 1998). While these models are
showing effectiveness for
some, they are heavily medically focused with no clear

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