International Journal of Nursing Practice 2008; 14: 122–128

RESEARCH PAPER

The lived experience of gay men caring for others

with HIV/AIDS: Resilient coping skills
Ian Munro RN PhD
Lecturer, School of Nursing, Deakin University, Burwood, Victoria, Australia

Karen-Leigh Edward RN PhD

Research Fellow, School of Nursing, Deakin University, Burwood, Victoria, Australia

Accepted for publication November 2007

Munro I, Edward K-L. International Journal of Nursing Practice 2008; 14: 122–128
The lived experience of gay men caring for others with HIV/AIDS: Resilient coping skills

There is a dearth of research conducted on the relationship aspect of gay men caring for gay men. This Australian research
conducted in 2002 investigated the emotional effects of HIV/AIDS on the gay male carers of gay men with the disease. This
study was phenomenological inquiry and employed van Manen’s approach to content analysis. Twelve participants for the
study were recruited. The results produced emergent themes relating to coping with HIV/AIDS, living day-to-day with
HIV/AIDS, coping with the last phase of AIDS towards death, saying goodbye and remembrance. This research highlights
the resilient coping style of carers of persons living with HIV/AIDS. The research also gives rise to recommendations for
practice and educational contexts in terms of the support and care considerations for persons living with HIV/AIDS and
their carers.
Key words: AIDS, gay men, HIV, relationships, resilience.

INTRODUCTION
There have been a small number of papers exploring the
emotional impact of HIV/AIDS conducted either in
America or in Britain.1–7 However, most research has
focused on families who are caring for a gay man who has
returned home to be cared for until he dies. There is a
dearth of research conducted on the relationship aspect of
gay men caring for gay men. This Australian research
conducted in 2002 investigated the emotional effects of
HIV/AIDS on the gay male carers of gay men with the
disease.8
Before the introduction of triple therapies, one key
effect HIV/AIDS has on the gay community is the way
Correspondence: Ian Munro, Deakin University, 221 Burwood Hwy,
Burwood, Vic. 3125, Australia. Email: ian.munro@deakin.edu.au
that this disease affected gay men who have this illness: it
was seen as a debilitating illness, which led to an early
death. The rallying of support from all sectors of the gay
and lesbian community to assist their fellow male infected
members has been a unifying force. It can be argued that
no other disease affects individuals in this way.5,9–11 Some
of the effects of this disease have been described in terms
of the lack of a time frame for the disease process com-
bined with the relatively young age of the people affected
by the illness.9 Because of the wasting of the body associ-
ated with this disease, it has devastating effects on gay men
who, according to Anderson and MacElveen-Hoehn,9
highly value their body image. These authors further add
that AIDS and the treatment of the person living with
HIV/AIDS (PLWHA) is perceived through homophobic
eyes. Added to this, the medical profession is forced
into complex trial and error medical management for

© 2008 The Authors

Journal compilation © 2008 Blackwell Publishing Asia Pty Ltd doi:10.1111/j.1440-172X.2008.00675.x
Gay men caring for others with HIV/AIDS
PLWHAs.9 Treatment was viewed from the perspective
of AIDS being seen as an inevitably fatal, sexually trans-
missible disease; however, since the advent of triple thera-
pies for HIV, this disease is now viewed as one that can be
managed.
With the view of HIV being seen as treatable, the need
to protect oneself from infection seems to have become of
less focus for individuals in recent times. This is demon-
strated by a rise in the recent infection rates of HIV.
Although new treatments offer some hope to those
infected, there remains the problem of treatment-
resistant HIV and new versions of the virus. In public
health terms, it is superior to avoid becoming infected,
than treating the disease. In 2006, there were 39.5 million
people living with HIV worldwide. Of that number more
than four million people were infected with HIV in 2006
and 2.9 million people died with AIDS-related illness in
2006. In Australia, during the second quarter of 1993, 42
people (39 male, 3 female) were reported as having newly
acquired HIV infection, identified by a negative test
within the 12 months before diagnosis or the diagnosis of
HIV seroconversion illness. Six years after 1993, in the
last quarter of 1999, 43 cases were reported as having
newly acquired HIV infection. During the fourth quarter
of 2006, 96 males were reported as having newly acquired
HIV infection.12 A history of homosexual contact, with or
without a history of injecting drug use, was reported in 86
(89.6%) cases. Seventy-nine deaths following AIDS were
reported in Australia by 31 March 2007 compared with
112 deaths in 1999. These statistics while demonstrating
efficacy in treatment modalities for HIV/AIDS, by a
reduction in AIDS-related deaths between 1999 and
2007, are alarming in terms of the rise in newly diagnosed
HIV infection rates. Additionally, the figures have broader
implications in terms of the predominant category
affected by this illness being homosexual/bisexual males.
Theoretical framework
Nurses have a central role in assisting carers to provide
care to their loved one. To be able to do this, nurses
should have an understanding of the intimate interper-
sonal care required for their patients; they also need to
have an understanding of intimate interpersonal relation-
ships. The concept of interpersonal care in nursing is
central to the way in which nurses interact with patients.
In the foreword to Watson’s work, Nursing: Human Science
and Human Care. A Theory of Nursing,13 Leininger argues
that many nursing theorists have attempted to identify
123
these components, which are central elements of nursing.
Further, Morrison claims that care will be the central
concept that nurses will research in this new century, thus
defining for nursing the concept of care.14 Daily physical
patient care is common to all aspects of nursing. Added to
this is interpersonal care, which is one of the main areas
that nurses have as their focus with patients. Watson
maintains the nursing aim through the ‘caring process [is
to] help the person attain (or maintain) health or die a
peaceful death’.15 Similarly, Peplau believed that the role
of the nurse is to assist the patient to find new ways of
coping with the world in which they live.16
Gaining an understanding of an individual’s illness
experience, and of their pain and suffering were two areas
Peplau viewed as the province of nurses, particularly psy-
chiatric nurses.16 Peplau bought into focus for the first
time the role of psychiatric nursing: that is, the interper-
sonal relationships with patients.16 By utilizing the con-
cepts argued by Peplau, the nurse is able to develop a
nurse–patient relationship, in which Watson described
the therapeutic interpersonal process, one of her carative
factors, to be one where ‘confidence and trust, faith and
positive expectations are increased. The patient is more
likely to value the nurse, [and] the interaction between the
two’.15 It is important for nurses to have an understanding
of the lived experience of patients to be able to provide
better care to patients and their carers.
METHOD
This study was phenomenological inquiry and employed
van Manen’s approach to content analysis.
Access to participants
Twelve participants for the study were recruited from a
variety of avenues, such as through gay general practitio-
ner practices, the Victorian AIDS Council (VAC) care
teams and major HIV/AIDS services. Sampling continued
to saturation, that is, when no more themes were devel-
oped or brought forwards by the participants, data collec-
tion ceased.
Ethical considerations
Ethics approval was provided by Deakin University
Human Research and Ethics Committee. All transcripts
were given a code and no names or health-care facilities
were identified. For the purpose of the thesis pseudonyms
were devised for both the informant carer and the partner
or friend for whom they cared.
© 2008 The Authors
Journal compilation © 2008 Blackwell Publishing Asia Pty Ltd
124
Data collection
The data collection method was through two audio-taped
semistructured interviews for each participant. The time
and venue for the interview was contingent on when and
where the participant felt comfortable. The venue for the
interview was frequently dependent on whether the carer
wanted their partner to know that they were taking part in
the research. Prompting questions guided the investiga-
tion of the phenomenon of caring for someone with HIV/
AIDS. The focus prompting question was—‘What is it
like for you to care for someone with HIV/AIDS on a
day-to-day basis?’.
Data analysis
The process of analysis used was thematic analysis, con-
sistent with phenomenological thought. van Manen17
explains how analysis can be undertaken in three ways:
first, by reading the text as a whole to gain contextual
understanding; second, by a selective highlighting of pas-
sages to identify themes from the data; third, by taking a
line-by-line analysis of the transcribed interview to gain
in-depth understanding of the phenomena. These three
processes were used in this research.
Through this process of analysis, themes will develop
from the research data. van Manen numerates four
descriptions which assist in the development of themes,17
namely:
1. theme is the needfulness or desire to make sense
2. theme is the sense we are able to make of something
3. theme is the openness to something
4. theme is the process of insightful invention, discovery,
[and] disclosure (van Manen’s emphasis).
Once the interviews were transcribed, they were read
several times to gain familiarity and comprehension of
what was being said by the participants. Simultaneous
listening to the taped interviews from the participants
enabled further contextualization of the transcript-
revealing silences, laughter and so on that give access to
more than just words.
To assist in the refining of themes, van Manen sug-
gests that by means of writing and re-writing, a focus
and clarification of the essences of the phenomena was
developed. Additionally, a combination of reading the
transcriptions and listening to the taped interviews was
undertaken to gain a whole and an insightful global view
of the phenomenon.
© 2008 The Authors
Journal compilation © 2008 Blackwell Publishing Asia Pty Ltd
I Munro and K-L Edward
RESULTS
The results produced emergent themes relating to coping
with HIV/AIDS, living day-to-day with HIV/AIDS,
coping with the last phase of AIDS towards death and
saying goodbye and remembrance.
Emergent theme one: Coping with HIV
and AIDS
Most men in this research expressed the notion that there
was an element of luck involved in who acquired HIV.
This created a ‘no blame’ circumstance, as the idea that ‘it
could have been me’, which allowed them to be compas-
sionate rather than angry about the presence of the infec-
tion. Bennett18 identified the concept of luck in her
research of 10 homosexual men. The issues explored
were ‘catching’ HIV and the stigma associated with gay
men’s identity and HIV/AIDS. Her qualitative research
developed a theme of ‘Lucky me’ where her carers believed
there were others who were in a far worse situation than
they were. As a consequence, participants viewed their
good health as being part of their luck. This also mini-
mized their own problems, placing their partner’s illness
in a larger perspective, but at times denying its impor-
tance for either man. From the time of becoming HIV-
positive, a new identity was formed and with the diagnosis
came changes to relationships. One common element
found among carers was their lack of blame for the partner
becoming HIV-positive. Having contracted the virus, they
changed their sexual practices to protect the carer who
was HIV-negative. Carers who were in sexual relation-
ships were able to carry on their loving sexual relationship
with their partner until he became increasingly ill with
opportunistic infections. When he was ill, they tenderly
and diligently undertook complex care to nurse him back
to better health.
All carers in the research knew their own HIV status.
While they identified themselves as gay men, they were all
too aware of another stigmatizing variable to their gay
identity, that is, being seen as HIV-positive. The men in
relationships with HIV-positive partners had regular
blood tests to be constantly informed about any change to
their HIV-negative status. If the carer were to become
HIV-positive, they thought their future would be differ-
ent. Some carers felt having regular tests was a reminder
they were constantly at risk of acquiring HIV from the one
they loved. Some authors highlight how HIV-positive gay
men who volunteer their time to care for others with
HIV, are witness to their own future.4,10,19,20 For example,
Gay men caring for others with HIV/AIDS
despite one carer in this study being HIV-negative, the
testing did not reassure him. This constant fear of infec-
tion had the effect of placing an emotional distance in his
relationships. The carer discusses his repeated tests:
. . . I went through a stage myself, where a few friends had
tested positive and I-tested negative and I went for another test
and tested negative and I was sort of getting a bit paranoid
about the whole thing. Thinking well why are they all positive
and I’m still negative?
Emergent theme two: Coping with
day-to-day living with HIV/AIDS
All carers identified the isolation and social stigma
present, first from being homosexual and second, from
coping with a sexually transmitted terminal illness infect-
ing their partner. These factors made caring more
complex and difficult. Only one participant described this
time as enjoyable while he cared for his dying partner.
Some of the difficulties carers had to face included coping
with their partner’s denial of the illness, managing the
various treatment appointments and keeping up with dif-
fering medical regimes. Several authors suggest that what
makes HIV/AIDS more complex is the relative youthful-
ness of those who are ill and the fact they are male,
given that males are poor attendees of health-care
services.10,21–23
Five carers from the research had to cope with AIDS-
related dementia. Sadock and Sadock believed that AIDS
infects the spinal cord and brain of 67% of patients; as a
consequence, there is a high level of AIDS-related demen-
tia. Dementia is very difficult for any carer to cope with,
as there is a loss of personality of the individual and a
decline in the personal habits of the dementing person.24
The carer has to be vigilant all the time. One carer found
this with his friend when he ‘. . . nearly burnt the place
down. He burnt a towel over the heater. Little things, he
just forgot. He doesn’t drive; he hasn’t driven for years.
He gets me to drive, which is fair enough. He doesn’t like
to go too far from the place, as far as that goes’.8 So not
only did carers need to watch for opportunistic infections,
but they had to observe all activities to ensure the
PLWHA and others were safe.
One of the many ways in which these carers coped was
to use their sense of humour to help them cope with the
difficult situations in which they found themselves. The
carer’s use of humour helped them manage and cope with
life’s difficulties. Taylor suggests that the use of humour
125
allows individuals to temporarily escape their difficult
situation.25 At times participants described this sense of
humour as ‘black’. To give an illustration of this, one
carer in this study talked about a minister who was to
conduct a Salvation Army funeral service for his friend
living with HIV/AIDS. The minister’s name had a sexual
connotation, which the carer thought was very funny. In
addition, he hoped there would be ‘. . . lots of tambou-
rines, as they would have been fashionable’. This carer’s
sense of humour assisted him to cope as he took part in his
friend’s funeral service.
Emergent theme three: Coping with the
last phase of AIDS; The decline to death
It was essential that during this last phase carers had to
educate themselves about the opportunistic infections, be
vigilant and manage these potential symptoms. Carers
were excluded from using health-care services including
home-based carers, or seeking daily assistance from others
by the PLWHA as the PLWHA wished the carer to under-
take all of their care possibly as a means of limiting their
felt shame and stigma. This created a two-edged sword,
one of isolation for both the carer and the PLWHA;
however, most used the positive strategies they adopted in
their caring role—such as focusing on maximizing their
remaining time together and ensuring quality. This was a
testing time and their relationship actively changed from
that of mutual love, to that of care and dependency.
Carers went through a grief process, in these cases, an
anticipatory grief before the actual death of the PLWHA.
Despite their diligent caring, the ultimate outcome was
not that their partner would become well, but further
deteriorate to his eventual death. There were a number of
challenges to these carers and their intimate relationships;
however, they employed a number of strategies to maxi-
mize the quality of life, making the transition from a
sexual relationship to one where caring became the focus.
There is an interesting parallel between nurses and these
gay men carers. Lawler argues that the relationship
between the nurse and the patient is crucial in the illness
experience.26 She makes the point that nurse–patient rela-
tionships have clear boundaries about when they begin,
how they will progress and to when they will end. Within
this relationship, the degree to which the patient is going
to be reliant on the nurse is assessed and altered in terms
of their dependency needs. This relationship is con-
structed in what Lawler describes as an environment of
permission. This social construct, Lawler argues, gives
© 2008 The Authors
Journal compilation © 2008 Blackwell Publishing Asia Pty Ltd
126
control to the patient, so they can feel anxious, vulnerable
and uncomfortable in unfamiliar surrounds. This relation-
ship Lawler discussed is clearly different from the rela-
tionship carers have with their partners. The men in this
research formed close intimate relationships with the men
they cared for, and the ‘nursing’ they undertook was
through a sense of connected love and compassion. This
was a painful growth process for the carers and was under-
taken in relative isolation of supports because of the
stigma attached to HIV/AIDS and the difference in
legal perceptions of a male–male defacto relationship as
compared with a male–female defacto relationship in
Australia.
Emergent theme four: Saying goodbye,
but wanting to keep the memory alive
Carers had opportunities through various public memori-
als to remember those lost to this virus. On these occa-
sions, those currently infected review their own health
status and lamented the loss of good health. These memo-
rials also provide the opportunity for health promotion
message of safe sex. Carers had various methods of
remembering their loved ones. For some, speaking at
their funeral was important. Others wanted to create a
regular memorial time, when friends could get together
and remember. The International Day of Recognition for
AIDS was significant for some. Although not everyone in
the research had lost their partner, all the men had known
others lost to this disease.
One carer had to cope with his own and his partner’s
feelings about death and dying; the partner was concerned
about what would be put on the death certificate. He did
not want to be identified as someone who died from
AIDS. The PLWHA was concerned about the stigma asso-
ciated with AIDS, which was identified by Kubler-Ross in
past research of AIDS clients.27 The carer was surprised at
his partners’ fear about becoming another statistic to this
virus.
There are many ways to remember a lost loved one.
The most common ceremony is the funeral, saying good-
bye to the physical body of the deceased, which assists
those living in coming to terms with their loss. This cer-
emony is usually mixed with memories of the individual
when they were alive, so those present could share their
collective memories with others. Funerals are part of peo-
ple’s social rites which allow the living to finalize their
relationship with the deceased.27–30 The funeral ceremony
© 2008 The Authors
Journal compilation © 2008 Blackwell Publishing Asia Pty Ltd
I Munro and K-L Edward
was often a difficult time not only for the carers, but also
for family and friends. Making this event harder to bear is
the relative youth of these men, combined with the stig-
matization of HIV/AIDS and homosexuality. Past litera-
ture indicated there had been a lack of involvement, or
exclusion of either the partner or friends from these
important farewell ceremonies.3,30,31 The carers from this
research were able to either have the PLWHA final wishes
enacted, or be a voice at his funeral.
Being resilient: Carers’ strategies to cope
In ‘normalizing’ the death, carers hoped this would assist
them coping with this premature death. By minimizing
their own concerns, carers hoped these would not add any
further stress to his last remaining days. To be able to be
with him, carers continued working without breaks,
because if they stopped and thought, this only brought the
enormity and sadness of the situation they were into the
surface. Those with religious convictions called upon
these to assist them through this difficult time. Upon his
death memorial events became important to help keep
the memory alive. To assist this, carers kept possessions
which reminded them of the PLWHA.
The early works of Werner and Smith32,33 and
Garmezy34,35 explored resilience, suggesting that caring
environments, using humour, faith, reframing negative
experiences and feeling hope were self-righting capaci-
ties. Bachay and Cingel suggested three constitutional
factors that enhance resilience: self-efficacy, well-defined
faith lives and the ability to reframe obstacles.36 The
authors put forwards that in conjunction with these
emotional and cognitive factors, support networks and
relational/psychosocial factors also play a role in enhanc-
ing the experience of resilience for individuals. Involve-
ment such as talking with, crying, laughing and relating
individually to the PLWHA are all forms of caring, all
restorative and are qualities found in resilient individu-
als, and yet difficult to quantify in terms of costs and
benefits. The presence of at least one caring person, such
as someone who conveys an attitude of compassion, pro-
vides support for a sense of well-being, and fosters resil-
ience and coping strategies can ultimately move towards
adaptation for both the PLWHA and their carer.37,38 The
experience of resilience did not result from avoidance of
risk; rather, it stemmed from exposure to risk and the
consequent successful negotiation through successful
problem-solving skills.39,40
Gay men caring for others with HIV/AIDS
IMPLICATIONS AND
RECOMMENDATIONS
This research gives rise to four key recommendations for
practice and educational contexts. The first recommenda-
tion is the development of home care education for carers
of the PLWHAs which enables carers who are caring for a
loved one at home to develop skills and knowledge to
assist them to provide safe caring on a day-to-day basis.
Part of this education should provide an opportunity for
the development of carer networks and assist in the
liaison between home care, health services and the ‘new’
carer.
The second recommendation involves support to
carers to facilitate the development of a medical home
history for the PLWHA. A medical home history can assist
the carer in discussing various drugs that have been pre-
viously tried, or when various tests had been undertaken.
It can also assist in negotiating various and differing
medical services to maintain a continuum for the
PLWHA. The strategy of keeping home health histories
needs to be supported in a standardized way to ensure
transferability of information between home and health-
care services who work with people with HIV/AIDS.
This research also highlighted a need for creating psy-
chiatric nurse consultant positions at health services that
care for PLWHA, so that HIV-positive individuals, part-
ners, carers and family members could have access to
timely mental health expertise in terms of dealing with
grief, managing the negative impact of stigma and result-
ant isolation, developing interventions related to AIDS-
related dementia and other mental, neurological and
behavioural disorders. These psychiatric services could be
delivered in a flexible manner, either within the hospital
or in the home setting.
And finally, that a social well-being strategy be devel-
oped by government health bodies to separate the
enmeshment of homosexuality from HIV/AIDS in the
mind of the general public as a process of de-stigmatizing
homosexuality. This social well-being strategy could also
endeavour to foster an acceptance of gay men and their
relationships and reduce the stigma associated with homo-
sexuality and HIV/AIDS.
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