Med Health Care and Philos (2017) 20:393–404
DOI 10.1007/s11019-017-9759-0
SCIENTIFIC CONTRIBUTION
A phenomenological construct of caring among spouses
following acute coronary syndrome
Janice Gullick1   · Mark Krivograd2 · Susan Taggart3 · Susana Brazete4 ·
Lise Panaretto4 · John Wu5 
Published online: 1 March 2017
© Springer Science+Business Media Dordrecht 2017
Abstract  The aim of this study was interpret the existen-
tial construct of family caring following Acute Coronary
Syndrome. Family support is known to have a positive
impact on recovery and adjustment after cardiac events.
Few studies provide philosophically-based, interpreta-
tive explorations of carer experience following a spouse’s
ischaemic event. As carer experiences, behaviours and
meaning-making may impact on the quality of the sup-
port they provide to patients, further understanding could
improve both patient outcomes and family experience.
Fourteen spouses of people experiencing Acute Coronary
Syndrome in Sydney, Australia were engaged in a single,
semi-structured interview. Interviews were audio-recorded
and transcribed verbatim. Data were analysed using herme-
neutic interpretation within a Heideggerian phenomenolog-
ical framework. Acute Coronary Syndrome disrupts lived
temporality, and the projected potential for carers’ being-
alongside. Carers experienced an existential uncertainty
that arose from difficulty in diagnosis, and situated fear as
an attuned, being-towards-death. They constructed pro-
tective strategies to insulate their partner and themselves
from further stress and risk, however, unclear boundaries
* Janice Gullick
janice.gullick@sydney.edu.au
Mark Krivograd
markkrivograd@live.com
Susan Taggart
susan.taggart@sswahs.nsw.gov.au
Susana Brazete
susana.brazete@sswahs.nsw.gov.au
Lise Panaretto
lise.panaretto@sswahs.nsw.gov.au
John Wu
john.wu@sydney.edu.au
for protection heightened carer anxiety. The existential
structure of care included one of two possible Heideg-
gerian modes: leaping-in care was a dominating mode that
required a high level of carer vigilance; leaping-ahead care
was a metaphorical walking alongside, as carers gave back
control, freeing opportunities for the person to ‘own’ care.
Supporting carers through the intensive phase of leaping-in
care, and equipping them for informed leaping-ahead care
should be a focus in both the acute and post-discharge care
phases.
Keywords  Acute coronary syndrome · Carers · Family ·
Heidegger · Myocardial infarction · Phenomenology
Introduction
Coronary Artery Disease (CAD) is the largest cause of
death in developed nations and one of the leading causes
of disease burden in developing nations (Gaziano et  al.
2010). Approximately 17% of Australians are affected
1
Sydney Nursing School, University of Sydney & Sydney
Local Health District., C4:18, MO2, Sydney, NSW 2006,
Australia
2
Liverpool Hospital, CB3F, Clinical Building, Cnr Goulburn
& Elizabeth St, Liverpool, NSW, Australia
3
Concord Repatriation General Hospital, Level 7, Burns
Unit, Hospital Road, Concord West, Concord, NSW 2139,
Australia
4
Concord Repatriation General Hospital, 3 West Cardiology,
Hospital Road, Concord West, Concord, NSW 2139,
Australia
5
Sydney Nursing School, University of Sydney, MO2, Sydney,
NSW 2006, Australia
13
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394
by CAD (NHF 2016) with around 200-per-day experi-
encing an acute coronary syndrome (ACS) in Australia
(AIHW 2016), around 400-per-day in the United Kingdom
(Charles River Associates 2011) and over 3000-per-day in
the United States (Giugliano and Braunwald 2014). Family
support is known to have a positive impact on recovery and
adjustment to CAD (Karner et  al. 2004; Tapp 2004). The
inclusion of family participants in CAD research provides
insight into the experiences, behaviours and meaning-mak-
ing that may impact on the quality of family support, and
could assist clinicians to anticipate the needs of family car-
ers during this vulnerable period.
Background
There have been several descriptive qualitative reports of
the experiences of family carers following acute myocardial
infarction (AMI) using approaches such as content analysis
(Arenhall et al. 2011; Eriksson et al. 2009, 2010; Henriks-
son et  al. 2007; Webster et  al. 2002) or thematic analysis
(McLean and Timmins 2007). Several have a focus on car-
ers and their role in encouraging lifestyle changes and car-
diac rehabilitation engagement (Astin et  al. 2008; Kärner
et  al. 2004; McLean and Timmins 2007), while others
focus of the impact of the event on the spousal relation-
ship (Eriksson et al. 2010; Mahrer-Imhof et al. 2007). The
generic, qualitative descriptive methods used in these stud-
ies provide a framework for busy clinicians to engage in
thoughtful, yet rigorous analysis without the need for deep
theoretical engagement or complex and sophisticated meth-
odologies (Caelli et al. 2003).
Existentialism, as the philosophical underpinning for
Heideggerian phenomenological analysis, goes further:
it illuminates an experience in a way that acknowledges
health as not merely a case of optimal biological func-
tioning, but as a process of confronting, and then working
through our essential frailty and impermanence. In this
way, the understandings clinicians derive can assist patients
and families to face their vulnerabilities and give meaning
to them (Aho 2014).
Despite a wealth of cardiovascular research, remarkably
few authors have sought philosophically-based, interpreta-
tive approaches to understand the lived experience of carers
following their spouse’s ACS. An older phenomenological
report from Australia explored the experience of just three
carers after a first-time AMI (Theobald 1997). The authors
described crushing uncertainty, an overwhelming emo-
tional turmoil, a need for support, an acceptance of lifestyle
changes and anxiety, heightened by a lack of information.
Most phenomenological work has come from Scandinavia
or Northern Europe. A recent Swedish study (Andersson
et al. 2013) interpreted the experience of 13 midlife CAD
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J. Gullick et al.
carers as standing alone when life takes an unexpected
turn. These carers dealt with feeling solely responsible,
living with a lurking unease, feeling left out of the picture
and having their life ‘on hold’. A Swiss study of patient/
partner dyads explored the meanings ascribed to, and prac-
tices arising from AMI (Mahrer-Imhof et al. 2007). Partici-
pants embodied the event as either a positive, transforma-
tive experience, a threat that imposed fear, or as a missed
opportunity for lifestyle change.
While these studies contribute to a developing body of
patient and family-centred knowledge, the nature of qualita-
tive research is highly context-bound with culture, environ-
ment and time shaping patient and carer experience. Carer
perceptions may vary between cultures and countries due
to a different context for informal caregiving. For example,
culture and religious beliefs are known to influence food
preparation, acceptance of physical activity, beliefs about
risk and illness and self-efficacy (Astin et  al. 2008; Web-
ster et  al. 2002) and acceptability and uptake of cardiac
rehabilitation (Chauhan et al. 2010; Davidson et al. 2010,).
Evolving approaches to CAD health promotion and second-
ary prevention create a geographical and historical con-
text that may influence patient behaviours and beliefs. It is
important to report contemporary qualitative findings, and
to situate these within national responses to inform public
health initiatives and resources for patients and families.
This qualitative study aims to investigate the experience of
family carers supporting people who have experienced an
ACS in Australia .
Methods
Philosophical framing
Heideggerian phenomenology, as the mode of inquiry, has
a focus on ontology; the study of the meaning of Being.
Heideggerian phenomenology provides a philosophical
lens for an ontological interpretation of these carer’s expe-
riences of being-in-the-world. Heidegger’s central concept
of Dasein (the Being of entities about whose Being we are
asking), and Mitdasein (being-with-others) creates the
backdrop for this interpretation with our being with others
in the world as the only point from which an ontological
analysis can begin (Heidegger 1962, p. 118).1 We are seek-
ing here to understand the Dasein, the meaning of Being,
for family carers who are thrown into a world of ACS, the
1
  Heideggerian references use pagination from the original German
text. This allows ready reference to any of the English translations
which have German pagination listed in the margins.
A phenomenological construct of caring among spouses following acute coronary syndrome 395
acute hospital system and being-beside a person with an
unpredictable disease.
Heidegger describes an ‘everyday understanding’ of
Being in which we situate our daily lives. On a background
of this everyday understanding, Dasein projects itself upon
possibilities and understands its own existence, related to
its possibilities. While to some extent we already under-
stand our Being, much remains concealed (Heidegger
1962, p.  4). Interpretation becomes possible when, rather
than just discovering Dasein in its everydayness, we probe
Dasein about its being-in-the-world (in this case, as a fam-
ily carer following ACS) so that this phenomenon is dis-
closed by Dasein in its own way.
A second integral concept is that our being-in-the-world
is grounded in care, or things that need to be taken care of
(Heidegger 1962, p.  315). Everyday being-in-the-world is
essentially a state of existing for the sake of others who we
discover in a meaningful environment. Even if we choose to
not to turn to others—to get along without them—it is done
so from an existential perspective of being-with. We pro-
ject ourselves upon possibilities for ourselves, but within a
world that we already inhabit alongside others, with Being
connected to shared concerns (Heidegger 1962, p. 122).
While the above concepts are useful philosophical touch
points for a generalised understanding of the human condi-
tion, they are particularly salient for health research. Health
is a condition of being-there, of being-in-the-world, of
being-alongside others and of Being in active engagement
with the things that matter in life (Svenaeus 2001, p. 101).
Phenomenology is, however, particularly useful to explore
the vivid phenomena of serious illness where the present
is dilated and the self is fractured and time is conceptual-
ised “as a landscape rather than beads on a string” (Toombs
2001, p. 41). What has come before life with serious illness
is suddenly and starkly contrasted with the new self which
is cut adrift—the past no longer forms the basis for the har-
monious imagined future. That new realisation can stretch
out the now, compress the past and shorten the future that
we had imagined with others-alongside (Toombs 2001,
p. 39).
Sample and setting
The participants were family members of people admitted
for management of an ACS to one of three government-
funded, university-affiliated hospitals in Sydney, Australia.
Using a purposive sampling approach, people diagnosed
with an ACS were identified from either an inpatient or car-
diac rehabilitation database. They were posted a covering
letter describing the study and inviting them to pass on a
participant information statement and consent form to the
person they identified as most closely involved in their care
and support. Alternatively, with permission from current
inpatients, carers were approached directly by researchers
not involved in their acute care and were given the recruit-
ment information to take home and consider, returning
their consent by mail if they wished to participate.
Fourteen spouses with a median age of 61 years (range
48–77 years) comprised 12 wives and two husbands and
this is representative of the gender balance in other carer
studies (Andersson et al. 2013; Eriksson et al. 2010,). The
median time from ACS was 18 months. Ten of 14 associ-
ated patients were either enrolled in, or had completed a
cardiac rehabilitation program at some stage. Five had been
managed with coronary artery bypass surgery (CABGS)
and six with percutaneous coronary angioplasty. One had
experienced a cardiac arrest requiring intensive care unit
(ICU) admission.
Ethical considerations
The hospital’s human research ethics committee approved
the study. Participants provided written consent, with the
knowledge and approval of the spouse with heart disease.
A counselling service was available to participants if issues
arose from the interview that they found distressing. Partic-
ipants are referred to by pseudonym. Some minor changes
have been made to some participant descriptors to maintain
confidentiality.
Data collection
The interviews were conducted by a nurse researcher expe-
rienced in qualitative interviewing. Semi-structured inter-
views with a mean duration of 34-minutes were conducted
using an interview guide, either face-to-face, or by tele-
phone with speakerphone capacity. Interviews were audio-
recorded and professionally transcribed.
Data analysis
Qualitative interview data were analysed using hermeneu-
tic interpretation. Hermeneutics refers to the analysis of
written records; in this case interview transcripts. Perhaps
the earliest expression of hermeneutics was described by
Friedrich Ast in the early 1800’s. Ast described the inter-
pretative process as seeking the spirit of the whole through
the individual, and in grasping the whole, to understand the
individual (Mantzavinos 2016). This notion of the ‘parts’
and the ‘whole’ is a common thread in writings on her-
meneutics. Parts may be portions of an individual’s inter-
view interpreted against the whole of their interview, or the
individual’s interview interpreted against the whole of the
body of our qualitative data. Analysis of the participants’
language and stories occurred over time in a process of lis-
tening, reading and rereading transcripts phrase-by-phrase,
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396
and responding to the semantics (the meaning and inten-
tions of the words chosen by participants) and the syntax
(the way words are put together). This process requires a
deconstruction of the texts and meaning but this is balanced
by a reconstruction to view the participant stories in their
larger contexts that include the historical, the cultural, and
the personal (Rescher 1997). In Heideggerian phenomenol-
ogy, these activities of hermeneutic interpretation occur in
a back-and-forth motion between the phenomenon we are
asking about (being a carer thrown into a world of ACS)
and its relationship to Being.
Victoria Leonard (1989) provides an explication of
the Heideggerian view of the person as the basis for her-
meneutic analysis in health research. This view sees: “the
person as having a world”—an a priori and meaningful
set of practices, relationships and language arising from
being born into a culture; “the person as a being for whom
things have significance and value”—and this may only be
understood by studying the person in a way that reveals the
relational and configurational context of the phenomenon
in their world; “the person as self-interpreting”—each
experience is encountered within a person’s linguistic and
cultural traditions against a background of significance;
“the person as embodied”—it is only when our everyday
understanding of our embodied, taken-for-granted self
breaks down during illness, that we develop insight into the
meaning of health; and “the person in time”—our tempo-
ral understanding of the present is shaped by our previous
understandings of a world we share with others, and by
our projected future possibilities (having-been and being-
towards). In hermeneutics, the role of such theory is to
reveal meanings that arise from an analysis of lived experi-
ence. The focus for this interpretation of lived experience is
provided by the identification of themes across participant
narratives which are illuminated using this philosophical
lens, and then validated through exemplars and paradigm
cases (Leonard 1989).
Rigour
The Consolidated Criteria for Reporting Qualitative
Research (COREQ) guided this research report (Tong et al.
2007). We applied de Witt and Ploeg’s (2006) criteria for
rigour in interpretive phenomenological research to achieve
a ‘balanced integration’ between the participant voice and
the philosophical explanation; ‘openness’ by keeping an
audit trail of research-related decisions; ‘concreteness’ by
making recommendations for practice change; ‘resonance’,
by exploring congruence of findings with previously pub-
lished work; and ‘actualisation’ by seeking impact and
realisation of findings through peer-reviewed dissemina-
tion. Data saturation was evident with multiple exemplars
providing a rich, ‘thick’ explication of themes, including
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J. Gullick et al.
negative case examples (Morse 2015). Researcher reflex-
ivity is another important aspect of ‘openness’. Three
authors (JG, LP & SB) were experienced cardiac nurses
who worked closely with patients and families in second-
ary prevention activities. We were concerned that while
family members were invited to attend secondary preven-
tion sessions, broader family needs were not adequately
addressed. We did not understand how these close family
members constructed their caring practices, or how these
caring practices were shaped by the nature of the disease or
the culture of the health system.
Findings
Existential uncertainty
Being a carer alongside the person with heart disease cre-
ated an existential uncertainty that arose from difficulty in
diagnosis and an anxiety about future events that situated
fear as an attuned, being-towards-death (Heidegger 1962,
p. 249) (Fig. 1).
Difficulty in diagnosis
Half of the participants described difficult and delayed
identification of their partner’s heart disease prior to or dur-
ing their ACS. This would typically manifest as the patient
exhibiting symptoms which would worry the carer, but
would be mistakenly attributed to a non-cardiac problem
by a medical practitioner or others. This left carers feeling
uncertain and powerless. Grace described the uncertainty
surrounding the diagnosis of husband Martin’s ischaemia
in the absence of pain:
‘He’d wake up at night and say “I can’t breathe!”…
We went up to the… hospital and he came back with
a puffer, thinking it was asthma... His own physician
said “Oh… he panics”, and I said “He never pan-
ics!”… we both knew that it was more than that.’
The expectation of severe pain as opposed to tightness or
discomfort threw Jenny and husband Will when he experi-
enced cardiac symptoms at rest; ‘…like sitting down watch-
ing television, getting a tight, squeezy feeling, like someone
was giving him a hug around the chest… He kept saying
“but there’s no pain!’’’
A change in colour was the main symptom noted by car-
ers Eleanor and Caroline. Eleanor, a nurse, knew there was
something seriously wrong with her husband Andrew, but
could not translate that into suitable actions by his hospital
physicians:
A phenomenological construct of caring among spouses following acute coronary syndrome 397
Fig. 1  A Heideggerian Construct of family caring in ACS
‘The pain … the doctor kept telling us it was typical
of GORD [Gastro-Oesophageal Reflux Disorder].
Obviously there was… a problem and they missed
something so we just trundled along watching him
getting greyer and greyer…’
Patrick found his wife Eileen collapsed on the bathroom
floor. Her atypical symptoms delayed timely management:
‘She had vomiting and diarrhoea… A heart attack
to us has always been pains up the arm, down the
back… the fact that there was no normal [symp-
toms]… We went to the doctor he just thought it was
a bit of a bug.’
For Oscar the difficulty in diagnosis led to an avoidable,
extensive AMI. His wife Amala explained,
‘A GP [general practitioner] put it down to muscular
pain… gave us a balm to rub in but it was lingering…
so Oscar said “because of my family history, Doctor,
I am a bit worried”… This angiogram… three weeks
we were waiting… He got a really severe pain and I
rushed him to hospital… but he had already had had
heart attack.’
For one couple, their past experience of heart attack
did not help prepare for the risk of a second AMI that was
nearly fatal. Anthea recalled:
‘Six years ago when he had his first heart attack, one
of the doctors… said to us “You don’t have to worry
mate, your heart attack’s done with!”…so somehow,
naively, I didn’t think he would have another heart
attack.’
Attuned fear and being‑towards‑death
For several carers, there was an ever-present sense of fear
that arose from an attunement to the perceived near-death
of their partner. Previously an abstract possibility, a sud-
den, authentic sense of their loved one being-towards-death
arose, with several people presenting with a life-threatening
AMI and/or the need for open heart surgery. Six of 14 car-
ers described an ICU stay that arose from either CABGS,
cardiogenic shock or cardiac arrest post-AMI. This highly
technical critical care environment and the suddenness and
acuity of the illness created an anxiety for carers that pulled
them out of the everyday comfort and familiarity of their
world and into what Heidegger (1962, p. 189) describes as
uncanniness – an existential mode of ‘not-being-at-home’
where everyday familiarity collapses. Anthea related the
foreign environment of the ICU:
‘When you walk into an intensive care unit… it’s
like being on another planet... all these tubes and
machines… He didn’t even look like him… his hands
were like legs of ham… and swelling… it was just
awful… He just lurched from one crisis to another’.
Being-towards-death was reinforced when, even after
the ICU stay, the language used casually by health profes-
sionals to describe myocardial damage had a particularly
finite sense to it. Naomi explained:
‘I was very concerned when they said to Jeremy,
“Part of your heart might have died”… and I was
saying to the nursing staff, “Could you please clarify
this for me because I feel as if I’m sitting with a dead
man walking”.’
Along with fear arising from the immediate crisis there
was a fear of the future; a fear attuned to the already-experi-
enced possibility of a cardiac crisis that led to a heightened
vigilance. The ‘normal’ temporality of future became a
concentrated form of being-towards-death; an ever-present
possibility awaiting a sudden actualisation, ready to throw
the life of the carer into disarray. At the same time, the
temporality of the present became and acute not-yet-death,
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398
which challenged a full life. The ‘out of the blue’ nature of
the ACS made carers consider the ‘what if’ situations and
the precariousness of their loved-one’s existence. Anthea
confided:
‘We were supposed to go away… to our friends… and
you think “What if that happened on the beach on the
South Coast?… He’d be dead!” So the scary thing is,
you think you’re doing reasonable things, but what
can you do to prevent that?’
Attuned fear and uncertainty was exacerbated when car-
ers discovered their loved one may have been hiding symp-
toms. Carer, Grace explained, ‘I wouldn’t know if Martin
was ill… because he wouldn’t say. It’s only what I can see,
and if I ask him too many questions, he gets cranky.’
Cate was reluctant to be the centre of attention, or to
be made a fuss over after her AMI, despite being an allied
health professional herself. She played down her symptoms
to her husband and work colleagues. Her husband Sam
explained his own heightened vigilance in response: ‘She
never talks openly with me about… her heart condition…
I’m worried she won’t let anybody know [about symptoms].
That’s why I try to stay close to her.’ Sam described the
hiddenness of communication as partly arising from his
East Asian culture: ‘Sometimes with [our] culture… we
speak, but we don’t want to talk’.
Protection and self‑protection
Carers dealt with their new life circumstances through pro-
tective strategies that aimed to insulate their partner and
themselves from further stress and risk.
Protection as care
Following the sudden cardiac event, for several carers, the
nature of their spousal relationship changed with their part-
ner perceived as suddenly frail and vulnerable. Women car-
ers in particular described a loss of strength and masculin-
ity that previously defined their partner within the spousal
relationship. Jenny explained of 63-year-old husband Will,
‘For a man to be capable and competent, suddenly it’s
like a big oak tree being felled.’ While Louise’s husband
Anthony was older at 84-years, she still had difficulty com-
ing to terms with the loss of his masculine strength and
capability, ‘Sometimes I say “Where he’s gone, the man I
married? This is like a shadow”.’
This physical vulnerability led to several modes of
protection. Carers were protective of the frail post-opera-
tive patient. For example, after Ian’s bypass surgery, wife
Anne was protective of his surgical wounds: ‘We’ll sleep
in separate beds, Darling, in case I knock you’. Of con-
cern, and incongruent with contemporary understandings
13
J. Gullick et al.
of secondary prevention, there was a move by several car-
ers to restrict the physical activity of their loved one, with
‘slowing down’ conceived as a mode of protection. Juliette
explained this ‘slowing down’ after husband Jack (68yrs)
had his AMI while working at the markets: ‘He had a rest
for six months. Since then he hasn’t been doing all that
much… We do enough just to get by.’
Amala described how her husband Oscar, from an
Indian background, had stopped full-time work in his mid-
50s after his CABGS. Six-years later she conceptualises
her husband as no longer normal following his recent AMI
and earlier bypass surgery:
‘I mean bodily his system because of his surgery, his
lifestyle he has to be different from a normal person.
Better not to do very hard work… He can’t be doing 5
days… just light work and… they see that he doesn’t
exert himself in any way.’
Carers sought to protect not only the physical, but the
emotional well-being of the person, with stress seen as an
additional risk to their heart health. Naomi hid the fact that
she had fallen and fractured several ribs the same day her
husband Jeremy had emergency CABGS, ‘It became a ter-
rible struggle… just to do anything for myself let alone pre-
tend to him as I did, that I was fine, because I didn’t want
him to know.’
Unclear boundaries for protection
While protection was seen as an important care strategy,
the boundaries for protection were unclear with carers
often unsure of the extent to which they should limit their
partner’s activity. Grace explains:
‘I really feel I can’t ask him to do anything too strenu-
ous… and I don’t know whether I’m doing the right
thing… I just don’t know how much he should be
able to do… whether I was being overprotective or
whether I should let him go ahead and do things.’
Sam concurred: ‘I’m still struggling… The options [are
like] a boat. I don’t know the navigator. I don’t know where
I’m going. I need some direction.’
Self‑protection
In addition to protecting the well-being of their loved
one, carers prioritised self-protection using several well-
described coping strategies. Three carers described avoid-
ant modes of self-protection that had an important function
in the acute crisis. In self-protective mode, Anthea refused
to talk about the possibility of things going wrong for hus-
band Neil:
A phenomenological construct of caring among spouses following acute coronary syndrome 399

‘He seriously could have been dead and that’s why I more relieved because… it’s up to Him to let Cate
have anxiety attacks… That whole time he was sick, I stay or… to take Cate away… So I just leave every-
refused to let that thought in my head… I’d go “I’m thing to Him and I feel more relieved.’
not discussing it… I’m not thinking about it, I’m not
Self-protection was conceived as a longer-term consider-
having negative thoughts”.’
ation as some carers sought to take control of their lives and
This avoidant self-protection strategy could extend to reset priorities. This meant making a choice among a range
an ongoing, emotion-focussed coping style. Sam and Cate of what Heidegger (1962, p. 195) would refer to as possible
coped with Cate’s premature heart disease and permanent selves. Anthea, who had somewhat of an existential crisis
myocardial injury by avoiding the issue: ‘On the surface… after husband Neil’s AMI, found her demanding full time
we try to pretend nothing happened.’ work was no longer justifiable and sought to protect both
More positive, solution-focussed self-protection was their well-being: ‘I’m going to leave [work]. We’re going
demonstrated by several cares who placed boundaries to move… have a quieter, less stressful life… and just get a
around caring, carving out time for themselves. This self- part-time job… I don’t want this… When this happens you
protective strategy was valuable during the hospitalisation have to reassess, ‘cause you have a second chance”.
period which was particularly taxing. Seventy-one-year-old
Louise explained, ‘Every day I was there in the hospital but
Leaping‑in versus leaping‑ahead care
I made sure that at 4 o’clock I’d go back home’. Carving
out even small periods of ‘time-out’ had the capacity to re-
Leaping‑in care
energise carers in the acute phase. For Jenny, ‘I just went
to the park and sat in the sun. It was lovely with a cup of
Heidegger (1962, p.  122) conceptualised care in one of
coffee.’
two possible modes: ‘that which leaps in and dominates,
While most carers found it difficult to delegate respon-
and that which leaps forth and liberates’; discussed here as
sibility for the bedside vigil during hospitalisation, they
leaping-in and leaping-ahead. Leaping-in is a dominating
carved out time for themselves after discharge. Anne
mode of care, where control is taken away from one person
explained, ‘I wouldn’t have left him while he was ill... but
by another. For example, the carer directly taking care of
once he was well enough I said “Do you mind? I’m going
things for the sick person. Several carers were reluctant to
out for a few hours”.’
leave the bedside during the hospitalisation period, and this
Three of the 14 carers sought professional psychological
leaping-in presence was linked to their perception of the
support in a solution-focussed approach to self-protection,
ACS as a life-threatening event: Amala explained: ‘I didn’t
acknowledging their difficulty in adjusting to the uncer-
think about myself during this time… That first two weeks
tainty of their new situation: Chris revealed: ‘I got the
was very crucial. I was with him’.
name of someone I could talk to… You find… you’ve just
After discharge, leaping–in care required a high level of
got no-one looking after you. I feel I’m a bit out on a limb’.
vigilance. Anthea explained: ‘I ring him, now… three or
The crisis seemed to make some carers more comfort-
four times a day whereas I only used to ring once’. Night-
able with expressing their own vulnerability, and in a form
time and sleep was a threat to vigilant, leaping-in care for
of self-protection, more open to actively seeking the love
Anthea:
and support of their family. Patrick explained:
‘I used to stand outside his bedroom door at night…
‘Sometimes… I say to my children and grandchil-
I’d think “Yeah, he’s breathing”… I said to him “You
dren… and with Eileen, “I need a hug”… I don’t have
have to sleep with your bedroom door open”… if
to explain why. It’s just that life’s whizzing around at
there’s anything, I can hear it.’
a million miles an hour and we’ve been married for
51-years.’ Grace was unwilling to leave decisions about physical
activity levels to her husband. Leaping in, she negotiated
Sam’s wife Cate was remarkably young and free of mod-
with Martin’s cardiologist to prevent what she felt was an
ifiable risk factors when she had her AMI, and this mysti-
unsafe level of activity as her way of taking care.
fied her physicians. This complete uncertainty about why
this had happened, and how a second event could be pre- ‘There was one walk… which Professor X heard he
vented, meant that Sam could not seek reassurance in pre- wanted to do… and I said “I really don’t like it, I
scribed secondary prevention strategies. His religious faith think it’s too much for him, pushing himself for three
allowed him to let go of things he couldn’t change: or four days…”
‘Sometimes… when I read the Bible and I see what Carers sometimes described what was closer to a par-
God says… about how He controls our life… I’m ent–child role, leaping-in when their partner was not ready

13

400 J. Gullick et al.

to take responsibility for self-care. This was frustrating for ing the [blood pressure and pulse] readings, the exer-
Eleanor who had a hectic work-life and three children to cises… I gained a lot of confidence out of that.’
organise;
Part of leaping-ahead care was learning when to ‘back
‘The biggest problem I have is making sure that he off’ and allow the person some space to deal with emerging
keeps taking his pills and that they don’t run out. I issues. Patrick explained of his wife Eileen;
feel like his mother because I’m the one that has to
‘I had the habit of asking her every morning “How
make sure he’s got his repeats, that he goes to the
are you feeling?... but she and I went to see a nice
chemist, and there was no way [without me] you were
psychiatrist… and the thing wasnotto keep asking if
going to get him into cardiac rehab’.
she’s feeling alright. Let her wait and tell you she’s
Louise also found the nature of her spousal role chang- not feeling too good.’
ing. As an elderly man with early dementia, self-manage-
Also exhibiting leaping-ahead care, Anne backed-off,
ment was not going to be an appropriate course for husband
letting husband Ian set his own boundaries for physical
Anthony, and his ability to contribute to the day-to-day
activity, despite her concern: ‘Sunday, he actually gar-
management of the household was diminishing. She needed
dened for 3-hours… I kept going out, and I said “Darl, you
to take control of his care;
can stop now” and he said “No, I’m enjoying this because
‘Having to be strong, and to be for both of us, and I feel well”.’
take care of everything now. I’m responsible in the
house, paying bills, go to the shops, checking for the
doctor, the medicine, do the cooking, do the cleaning,
Discussion
everything!’
Heideggerian phenomenology has provided a rich and
Leaping‑ahead care
rigorous methodology for this qualitative study. It is not
merely a contingent description (of my world versus your
In contrast, leaping-ahead care was evident when the carer
world), but a way of explaining meaning structures that are
sought to give control back, freeing opportunities for the
common to the human experience of being-in-the-world,
person to ‘own’ care for him/herself. In the early days of
with the lived body, attunement, temporality and being-
recovery, leaping-ahead care was a metaphorical walking
towards-death as analytical structures that result in new
alongside with the person, encouraging them to make small
patterns of human understanding (Svenaeus 2011).
steps in their own recovery in a supported manner. Anne
This study has located spousal caring following ACS
explained:
within a Heideggerian notion of care. For Heidegger,
‘I kept building Ian’s hopes up. I’d say “Go and sit Dasein (Being) and Mitdasein (Dasein-with-others) consti-
in the sun for a while”, and “You’re really doing bet- tutes the world, with care being a primordial structure of
ter”. If he wanted to walk, I walked with him. He’d being-in-the-world (Heidegger 1962, p. 192). Before carers
shower himself and I’d dry him…. so gradually I are thrown into the sick-world, their care may be described
could see Ian coming back.’ as inauthentic. They are lost in the ‘they’ world of the
masses where they are swept along by the tasks, by rules
Leaping-ahead, Anthea found a way to safely include
and standards of their life-world: ‘Dasein makes no choices,
husband Neil in tasks that would have once been his own
gets carried along by the nobody and thus ensnares itself in
domain:‘This morning I was out chopping up the tree he
inauthenticity’ (Heidegger 1962, p. 268).
said “I’ll come out and help”, and I said “Well, you just do
In the phenomenology of sickness, the illness deter-
the little twigs” and I was doing the big ones.’
mines how Dasein relates to one another, creating worlds
Attending cardiac rehabilitation and doctors’ appoint-
of cancer, of dementia, or of cardiovascular disease. For
ments was one way that more than half of the 14 carers
carers, the world becomes tinged with sickness, changing
prepared themselves for leaping-ahead care. They learned
the nature of, and priorities within, their relationships. In
what they needed to do to support secondary prevention
the case of the Mitdasein of the carer and the sick world,
activities and this gave them back some sense of control.
being-with-each-other is pre-conceptually determined by
Chris described preparing for leaping-ahead care:
the totality of the person’s temporal existence (their lived
‘I’ve attended almost every visit that Steve’s made to time on earth that has already formed them) (Heidegger
the cardiologist, to the electrician that implanted the 1962, p. 123). The structure of care is also understood in a
defibrillator… I have been to [cardiac rehabilitation] temporal sense, exemplified here with family carers under-
classes just to… see what he’s expected to do… See- standing their situation from the perspective of having-been

13
A phenomenological construct of caring among spouses following acute coronary syndrome 401
(alongside the person in a life-threatening situation) and
being-towards (a second cardiac event and/or death). Hei-
degger proposes that our temporal being-with-others is
also reckoned through planning, taking precautions and in
this way preventing: so if something is to happen “then”
(perhaps a second cardiac event), something else needs to
be attended to “beforehand”, so that whatever failed to be
dealt with “on that former occasion”, can “now” be made
up for (Heidegger 1962, p. 406). This helps to explain the
modes of caring in heart disease that included protection
and leaping in versus leaping ahead care as actions within
a temporal understanding of Being; Dasein projects itself
towards the possibility of a future crisis averted.
The carers’ existential uncertainty arose from the sud-
denness of the ACS, its disruption to carers’ lived tempo-
rality and their perceived lack of control over preceding
events. This existential uncertainty resonates with previ-
ous qualitative work. Uncertainty has been described as
a ‘lurking unease’ that encompasses both the immediate
future of the person experiencing AMI, and the broader
concerns for the family unit, particularly where children are
affected (Andersson et al. 2013). A ‘crushing uncertainty’
after AMI among a small sample of Australian carers was
framed by their past experiences, current life pressures and
fears for their loved one’s future health (Theobald 1997),
demonstrating the importance of this temporal understand-
ing of a threat to Being.
The suddenness of the ACS was an important precursor
to uncertainty in a Swiss phenomenological study. Uncer-
tainty arose from the unpredictable and uncontrollable
nature of the ACS, while for some, the protective power of
their previous healthy lifestyle behaviours was challenged
and disproven (Mahrer-Imhof et al. 2007).
Our study revealed frequent difficulty in diagnosis attrib-
uted in previous research to atypical symptoms that are
uncertain in origin, or are ascribed to less serious condi-
tions and consequently managed in inappropriate ways
(Henriksson et  al. 2007). Previous heart disease experi-
ence may be counterproductive, due to misinterpretation
of symptoms or attempting old treatment strategies instead
of seeking care (Ann-Britt et al. 2010). The powerlessness
some carers felt when atypical cardiac symptoms were
brushed off by physicians contributed to uncertainty. As a
result, carers feel ‘left out of the picture’ and disregarded
(Eriksson et al. 2010).
Atypical cardiac pain is common, and frequently attrib-
uted to gastric or musculoskeletal origins, while older age
creates a greater acceptance and normalisation of pain
(Henriksson et al. 2007; Berglim Blohm et al. 1998). Wait-
ing for an ambulance has been described by some family
members as an unnecessary delay with relatives often driv-
ing patients to the hospital (Henriksson et al. 2007). Ironi-
cally, the consequence of this is delayed treatment (Thylén
et  al. 2015); an important finding given every 30-minutes
of delay to reperfusion is associated with a 7.5% increase
in one-year mortality (De Luca et al. 2004). In light of this,
‘Call an Ambulance’ campaigns have, and should remain,
a focus for public education (American Heart Association
N.D.; Nader 2005).
The existential uncertainty arising from the carers’ sense
of their loved one being-towards-death, led to a threat to
future being-alongside their partner. Heidegger explains
authentic being-towards-death as moving from a detached
and disowned phenomenon, pushed to the realm of ‘not
yet’, to a fundamental attunement where it is ‘understood
as possibility, cultivated as possibility and endured as pos-
sibility’ (Heidegger 1962, p. 249–50). This attuned under-
standing is informed both by the direct experience of the
ACS event, but also from the things patients and carers are
told (Svenaeus 2001, p. 112); the language used to convey
things like heart ‘failure’ or ‘death’ of myocardium feeds
into their interpretation of their situation.
A Swiss phenomenological study described a ‘brush
with death’ after ACS with carers sharing a perception of
an untrustworthy, failed body with the possibility for death
‘experienced directly’. The attunement to potential death is
mediated by culture (Mahrer-Imhof et al. 2007), and carries
with it a fear of being left alone (Andersson et  al. 2013;
Arenhall et al. 2011). Among Swedish male carers, a new
attuned awareness that ‘life is limited’ confronted them
with the impermanence of both their partner’s and their
own existence (Arenhall et al. 2011). Being-towards-death
as a longer term mode of existential uncertainty has been
described in other illnesses such as cancer, even where the
person has survived the immediate threat, or the manage-
ment is deemed to be curative (Karlsson et al. 2014; Khatri
et  al. 2012). These stories of an attuned being-towards-
death as a shared facet of Mitdasein provide valuable
understandings in health research; they demonstrate our
continuing intersubjectivity in the face of a crisis, where we
confront together, our fundamental anxiety towards mortal-
ity (Toombs p. 241).
A new sense of their partners’ vulnerability and the con-
sequent need for carers to provide protection is congru-
ent with past research. In a Swedish study of male carers,
unobtrusive protectiveness’ involved a conscious, back-
ground care that included avoiding arguments and upset-
ting situations. Carers secretly picked up household tasks,
consciously avoiding difficult terrain on walks, and some
excluded themselves (or felt excluded) from sexual inti-
macy (Arenhall et al. 2011).
Unclear boundaries for protection increased uncertainty
for our carers. A similar mismatch between the expecta-
tions of patients and family around safe physical activ-
ity, and carers encouraging a slower pace of life has been
reported previously (Eriksson et al. 2010; Lukkarinen and
13

402
Kyngäs 2003; Najafi Ghezeljeh and Emami 2014) herald-
ing the normalisation of disease, the avoidance of ischae-
mic symptoms and replacing a work-focussed orientation to
life. Some people find slowing down satisfying, reordering
priorities in response to an existential crisis (Junehaq et al.
2014). However, others mourn a loss of personal freedom
(Lukkarinen and Kyngäs 2003), and the stifling effect on
social life and activities can lead to a sense of hopelessness
(Arenhall et al. 2011).
At times, the unclear boundaries for protection made it
difficult for carers in our study to know whether a leaping-
in or leaping-ahead style of care was appropriate. While
the dominating approach of leaping-in is the primary mode
of care during the health crisis, it is also appropriate in the
case of significant disability, such as cognitive impairment
or severe heart failure. It is, however, possible for leaping-
in care to be counterproductive. Leaping-in care seems to
equate to the regulative caring role described in a Swed-
ish phenomenological study where carers tried to enforce
behaviour change through authoritative or admonishing
communication styles (Kärner et al. 2004). Leaping-in was
described as ‘overprotection’ in a Dutch study when part-
ners’ interventions were observed as obtrusive or restric-
tive. Where this style of care continued over several months
after AMI it was associated with a reduction in global,
physical, social and emotional health-related quality of life
as a direct result of disturbances in goal-pursuit (Joekes
et al. 2007).
Overprotection was a major finding described in an
Irish study of AMI survivors, with a tension between the
perceived ‘sick role’ imposed by carers compared to the
‘recovery role’ sought by patients (Condon and McCarthy
2006). This perceived over-surveillance could be over-
whelming for patients and in some cases led to a rebellious,
and at times inappropriate, level of activity to demonstrate
their capacity. Overprotection had important consequences
for patients in an early AMI study, resulting in emotional
instability and an abnormal pre-occupation with health sta-
tus (Wiklund et al. 1988).
While the stage of recovery largely determines leaping-
in versus leaping-ahead care, once the crisis has passed and
the patient is some months from the event, there are impor-
tant outcomes arising from the caring style of the family.
Heidegger’s second mode of caring, leaping-ahead, gives
care back to the person in an authentic way (Heidegger
1962, p. 119). This is a more facilitative, liberating mode of
caring where partners are enablers for lifestyle change and
encourage their loved ones to listen to their bodies after a
cardiac event. Communication and common goals between
patient and carer are vital to this process.
Leaping-ahead care echoes the ‘participative role’
described by Kärner et  al. (2004); the ‘active engage-
ment’ process reported by Joekes et  al. (2007) and in
13
J. Gullick et al.
Mahrer-Imhof et  al’s ‘reconnecting’ (2007). These
themes describe a collaborative approach to lifestyle
changes based on respect and mutuality with spousal sup-
port being practical and co-operative, solution-focussed
and reliant on dialogue between patient and spouse. The
impact of such care is associated with higher health-
related quality of life (Joekes et  al. 2007). It can be
transformative, leading to sense of relationship maturity
characterised by increased consideration, communica-
tion and connection (Arenhall et al. 2011; Mahrer-Imhof
et  al. 2007). Leaping-in versus leaping-ahead care pro-
vides a useful metaphor in health research. This Heideg-
gerian notion has, for example, been used in a philosophi-
cal reflection to explain interactions between disabled
and non-disabled people: care that ‘leaps in’ closes off
possibilities for people with disabilities by encourag-
ing dependency, while promotion of the person’s per-
sonal choice and control opens possibilities in a way that
improves their quality of life (Fealy 2008).
The greatest perceived challenge to leaping-ahead care
occurred when patients hid their symptoms. This made it
more difficult for carers to hand-over care to their partner
and led to heightened carer vigilance. Symptom-hiding
is described in other studies, with carer’s inquiries about
symptoms perceived as ‘impermissible’(Lukkarinen
and Kyngäs 2003), resulting in carer and patient anger
(Henriksson et  al. 2007; Lukkarinen and Kyngäs 2003).
Concealment is an important concept in Heideggerian
philosophy: Dasein is ideally situated in what Heidegger
describes as a clearing of understanding about Being,
where things become meaningful and intelligible within
the human experience through language, and practical
day-to-day encounters with others (1962, p.  129). The
hiddenness of symptoms exhibited language as tool of
concealment, frustrating carer efforts to interpret and
understand, and so perpetually delaying their coming to
terms with the Dasein of caring.
Finally, carers sought modes of self-protection to con-
serve energy for caring. Self-protective strategies are
employed to reduce unwarranted mental and physical
stress (Andersson et  al. 2013) and to regain a sense of
control of the situation (Eriksson et  al. 2009). The need
for self-protection arises from a sense of being ‘solely
responsible’ for the wellbeing of both the recovering rela-
tive, and the rest of the family (Andersson et  al. 2013;
Lukkarinen and Kyngäs 2003). Self-protection is impor-
tant as carers of people hospitalised with a critical ill-
ness are known to experience higher rates of anxiety
and depression (Belayachi et al. 2014; Fumis et al. 2014;
Kourti et  al. 2015; Pochard et  al. 2005), with increased
one-year mortality among spouses following serious ill-
ness (Christakis and Allison 2006).
A phenomenological construct of caring among spouses following acute coronary syndrome 403
Limitations
Our sample characteristics may not be representative of the
broader ACS cohort. While the proportion of patients hav-
ing angioplasty and stenting in this study are similar to the
proportion of these interventions in recent Australian ACS
figures (42 vs. 43%), we had a higher proportion of people
treated with CABGS (35 vs. 8%) (Chew et al. 2013), and a
higher proportion of patients attending cardiac rehabilita-
tion than is reported internationally (71 vs. 15–30%) (Neu-
beck et al. 2012). This may affect the transferability of our
findings.
Conclusion
Despite public health campaigns and the development of
clear chest pain pathways, patients, families and clinicians
have difficulty identifying atypical cardiac symptoms. The
suddenness and acuity of ACS disrupts the lived temporal-
ity of carers and the projected potential for being-alongside.
Supporting carers through the intensive phase of leaping-
in care, and equipping them for informed leaping-ahead
care should be a focus for clinicians in both the acute and
post-discharge care phases. Carer resources should focus
on known, positive coping strategies to mitigate existential
uncertainty. Clarifying safe levels of physical activity, and
promoting strategies for open communication between cou-
ples about ongoing symptoms may decrease carer anxiety.
Acknowledgements  We would like to acknowledge the invaluable
contribution of our participants who gave their time and stories so
freely. We would also like to acknowledge funding support from (1)
Caring for Carers: A Better Practice Project Grant (Carers Program,
Sydney South West Area Health Service) (2) A Nursing Innovations
Grant (Sydney South West Area Health Service); and (3) Summer
Scholars Program, Sydney Nursing School, University of Sydney.
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