Article
Experiences of
hypoglycaemia unawareness
amongst people with Type 1
diabetes: A qualitative
investigation
Chronic Illness
2014, Vol. 10(3) 180–191
! The Author(s) 2013
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DOI: 10.1177/1742395313513911
chi.sagepub.com
D Rankin,1 J Elliott,2 S Heller,2 S Amiel,3
H Rogers,3 N DeZoysa3 and J Lawton1
Abstract
Objectives: To explore the experiences of people who have hypoglycaemia unawareness and its
impact on their everyday lives.
Methods: In-depth interviews with 38 people with Type 1 diabetes who have hypoglycaemia
unawareness. Data analysis used an inductive, thematic approach.
Results: Participants reported imposed and self-imposed changes to their lives following onset of
hypoglycaemia unawareness including: leaving employment, curtailing pastimes and spending more
time at home or being supervised by others. However, some reported getting on with life by
downplaying the significance and impact of their condition, which could put their health and safety
at risk. Many relied on frequent self-monitoring of blood glucose and/or prompting from others to
detect hypoglycaemia. Some expressed concerns about becoming a burden on family and/or
responding in irrational and aggressive ways to others’ suggestions to test for and treat
hypoglycaemia. Participants reported responding best to composed and directive prompts from
family. Health professionals mainly advised on clinical aspects, and did not enquire about the
emotional and psychosocial impact of hypoglycaemia unawareness.
Discussion: Hypoglycaemia unawareness can have a profound impact on people’s confidence,
careers and personal relationships. Healthcare professionals should pay more attention during
consultations to the emotional and social aspects of living with hypoglycaemia unawareness.
Keywords
Type 1 diabetes, hypoglycaemia, hypoglycaemia unawareness, patient experiences, qualitative
research
3
Diabetes Research Offices, Weston Education Centre,
King’s College London, London, UK
1
Centre for Population Health Sciences, University of
Edinburgh, Edinburgh, UK
2
Academic Unit of Diabetes, Endocrinology and
Metabolism, University of Sheffield, Sheffield, UK
Corresponding author:
D Rankin, Centre for Population Health Sciences, Medical
School, University of Edinburgh, Edinburgh EH8 9AG, UK.
Email: [email protected]
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Rankin et al.
181
Received 19 August 2013; accepted 1 November 2013
Introduction
Type 1 diabetes is a common chronic disease
which often arises in childhood or adolescence. While the exact causes are unknown,
the condition results from the destruction of
insulin-producing pancreatic beta cells
which regulate an individual’s blood glucose
levels. Hence people with Type 1 diabetes
need to adjust and control their blood
glucose levels themselves by taking insulin,
and they normally titrate doses according to
their blood glucose levels (determined by
self-monitoring of blood glucose, food
intake and physical activity).1
Hypoglycaemia is the most common side
effect of insulin treatment2 and occurs when
blood glucose levels drop below 3.6–
3.8 mmol/L. Clinically, hypoglycaemia is
defined by whether people are able to selfadminister treatment; hence, episodes which
can be self-treated are termed ‘mild’ whereas
‘severe’ hypoglycaemia requires external
assistance.3,4 Hypoglycaemia is normally
accompanied by autonomic symptoms (e.g.
sweating, palpitations, hunger) and neuroglycopenic features (e.g. confusion, altered
emotion, loss of temper).5 An individual’s
awareness of these premonitory signs and
symptoms is critical to avoiding progression
to severe hypoglycaemia.6 However, people
with Type 1 diabetes commonly develop
difficulties detecting these symptoms over
time – a condition termed hypoglycaemia
unawareness.7 Awareness of hypoglycaemia
is often variable but a degree of unawareness
affects approximately 25% of people with
Type 1 diabetes and this proportion rises to
almost 50% amongst those diagnosed over
20 years.8,9 Loss of awareness carries a threeto six-fold increase in risk of severe hypoglycaemia8,10 and severe episodes can result
in loss of consciousness, seizure and coma.11
Hypoglycaemia unawareness is now
recognised as being a major clinical problem
and several studies have been undertaken to
explore the mechanisms underlying its development7,12,13 while others have shown that
symptom awareness can be restored in
research settings through strict avoidance
of hypoglycaemia and with intensive clinical
support 14–16 Despite its significant clinical
impact, only one study has focused on
people who have impaired awareness of
hypoglycaemia; specifically, on their perceptions of their condition.17 This study
employed qualitative methods to explore
psychological factors that might inhibit
individuals’ efforts to avoid hypoglycaemia
and used the findings to inform development
of an assessment tool for clinical practice to
identify unhelpful health beliefs about hypoglycaemia unawareness.17 As limited qualitative research has been undertaken with
people with impaired awareness of hypoglycaemia to date, we conducted an interview
study to understand and explore: people’s
experiences of having hypoglycaemia
unawareness and its impact on their everyday lives; their attempts to address living
with the condition; and, their experiences of,
and views about, accessing and implementing advice from health professionals. Our
objectives were to develop a better understanding of people’s lived experiences of
hypoglycaemia unawareness and inform
recommendations for how people with the
condition could be better supported to live
with and manage the impact of their
unawareness of hypoglycaemia on their
everyday lives.
Methods
A qualitative design was used, comprising
in-depth interviews with people who had
hypoglycaemia unawareness. This exploratory design enabled participants’ own
understandings and experiences to be
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182
Chronic Illness 10(3)
explored in-depth and afforded the flexibility needed for them to raise issues they
perceived as salient, including those not
anticipated at the study’s outset.18
Sample and recruitment
Thirty-eight people with Type 1 diabetes
were recruited from two UK diabetes centres
as part of a broader study concerned with
hypoglycaemia unawareness.19 Participants
were identified from clinical records using
eligibility criteria, including: Gold Score > 4
(this is a visual analogue scale with ‘1’ being
always aware of hypoglycaemia and ‘7’
being never aware. A score > 4 indicates
impaired awareness of hypoglycaemia);20
problematic hypoglycaemia unawareness,
defined as having three or more episodes of
blood glucose levels <3 mmol/L, without
detecting symptoms, in 2 weeks of blood
glucose results; and, at least one episode of
severe hypoglycaemia, defined as requiring
third party assistance in the last 2 years.3,4
Clinical staff recruited participants and the
contact details of those who opted-in were
passed to the qualitative research team.
Purposive sampling was used to ensure
diversity of age, gender and occupation in
the final sample (see Table 1). Recruitment
and interviews were staggered to permit
concurrent data collection and analysis, in
line with the principles of Grounded Theory
research.21 Data collection was stopped
when data saturation occurred; that is,
when no new findings or themes were
identified in any new data collected.
Data collection
Semi-structured interviews were conducted
between May and July 2012 which were
informed by a topic guide developed in light
of literature reviews, original research questions, and revised in response to on-going
data analysis (see below). Participants were
asked to describe their experiences of, and
views about, having hypoglycaemia
unawareness; whether, and how, the condition had affected their own lives and those of
others; their strategies for preventing and
managing hypoglycaemia; advice/support
received from health professionals; and,
(any) unmet needs for information and
support. To help contextualise and interpret
their responses, participants were also asked
about their history of diabetes, their everyday lives (home and work); and, other
personal factors affecting their diabetes
management. Interviews averaged 60 min,
were digitally recorded (with consent) and
transcribed in full for in-depth analysis.
Table 1. Demographic characteristics of 38 patients (values expressed as mean SD or
percentage).
Age (years)
Gender
Diabetes duration at recruitment (years)
Occupation (no. and % at recruitment)
- professional (health, education etc.)
- semi-skilled
- unskilled
- student
- unemployed
- retired
- long-term sick
50.6 10.6; range 26–73
22 (57.9%) female
30.3 11.3; range 6–50
8
9
5
1
4
7
4
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(21.1%)
(23.7%)
(13.2%)
(2.6%)
(10.5%)
(18.4%)
(10.5%)
Rankin et al.
183
Data analysis
The method of constant comparison21 was
used to develop a framework of themes used
to code and further analyse the data. DR
and JL each performed their own independent analyses, reading each participant’s
interview in full before cross-comparing all
interviews to identify continuities and differences between accounts. The researchers
attended regular meetings (during and after
data collection) to compare interpretations,
explore participants’ underlying reasoning,
discuss deviant cases, resolve any differences
in interpretation and reach agreement on
recurrent themes and findings.21 The final
coding frame, which reflected the topics
explored with participants and emergent
themes, was developed once all data had
been independently and jointly reviewed and
consensus reached on key issues and findings. NVivo, a qualitative software package
(QSR International, Doncaster, Australia),
was used to facilitate data coding/retrieval.
Research ethics approval was granted by
the National Research Ethics Service,
King’s College Hospital Research Ethics
Committee (08/H0808/53).
Results
All participants described becoming aware
they had hypoglycaemia unawareness after
experiencing difficulties detecting physiological warning signs which alerted them to
the onset of hypoglycaemia. Below, we
explore the impact hypoglycaemia unawareness had on participants’ lives, the adaptations they made to counter threats posed
by the condition and their reliance on
frequent monitoring of blood glucose readings, or on family members and other
people, to detect onset of hypoglycaemia.
We also illustrate participants’ reactions to,
and preferences for, support provided by
other people, and their views about health
professionals’ advice to address hypoglycaemia unawareness.
The impact of hypoglycaemia
unawareness
While some participants could not recall
ever having had physiological signs which
alerted them to the onset of hypoglycaemia,
most described experiencing a gradual
deterioration in their symptom awareness
over time, and their ensuing emotional
reactions to losing this awareness. Indeed,
irrespective of the duration and intensity of
their unawareness of hypoglycaemia, virtually all participants recalled traumatic
events which had resulted from their being
unable to detect their blood glucose levels
going low. This included R19 (aged 57),
who recounted an incident when she had
not realised she was hypoglycaemic
and had:
run a bath and got into practically boiling
water. I, I, I don’t remember any of this
and, obviously, when I got in, apparently,
I started screaming and my then husband
came in and kind of rescued me . . . things
like that are really, really scary.
Likewise, R29 (aged 52) described an incident when she had been at home alone and
which had resulted in her feeling ‘terribly
paranoid’ when her husband now went away
on business trips:
I just knew I wasn’t right, came downstairs, sort of, actually I was sitting down,
coming down because I knew I wasn’t
right, you know, walked into the lounge
and fell over . . . I thought I’d had a stroke.
I couldn’t move one side at all, so I
couldn’t move. It was a freezing cold day,
the central heating was off, in December,
do you know, and almost the next thing I
was aware of was the police breaking down
the door.
Restricting and changing one’s life
As a consequence of these unforeseen and
sometimes very distressing episodes, most
participants described restricting and
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Chronic Illness 10(3)
changing their lives to lessen the risks and
impact of undetected hypoglycaemia. In
extreme cases, this entailed leaving or not
seeking paid employment. R30, for instance,
who had lived with HU for more than 20
years, described having felt compelled to
resign from her job as a caring assistant after
an unforeseen episode of hypoglycaemia
had posed risks to other people’s safety as
well as her own, and had resulted in her
losing confidence in her ability to look after
others:
I used to look after a disabled lady . . . and
we went swimming, obviously she needed
help getting in and out of the pool . . . and I
went hypo in the swimming bath when,
obviously I didn’t know, so it was me that
needed helping instead of her. [. . .] that did
take all my confidence away [and] I went to
pieces after that.
Other participants described giving up
pastimes and hobbies if these involved physical activity, such as gardening or walking
holidays, because being active increased
their risk of hypoglycaemia. This included
R28 (aged 43), who recently had had to give
up competitive sport after finding she was
unable to do intensity training ‘without
falling over with a hypo . . .’ a situation
which she described as ‘a big loss, a massive
loss for me really.’ Others described limiting
time spent away from home, especially if
they had to go out unescorted, due to their
fear of injuring themselves and/or their
concerns that: ‘if I don’t have anybody
around me who will know what to do if
I’m ill [hypoglycaemic] and I could get
treated as a drunk or whatever, ‘cause of
the side effects . . . I don’t want to be out of
control, I don’t, I feel embarrassed’ (R35,
aged 40).
Fear of injuring or embarrassing themselves also led some to making extensive
plans prior to going on even short
excursions from the home. This, as several participants pointed out, mitigated
any possibility of spontaneity in their
lives:
I can’t do anything spur of the moment
anymore. I have to think about, ‘how long
am I going to be out?’ ‘Have I got enough
glucose in my bag and will my blood sugar
last me through?’ You know, you just can’t
do anything at all without, you know
considering it, I’ve got to plan before I go
anywhere. (R15, aged 48)
In some instances, restrictions and negative
changes to careers and lifestyle were externally imposed, whether it be being ‘disabled
from [a military occupation], because I was,
as they called it, a danger to myself and
others’ (R25), having a driving licence
revoked, or, in R23’s case, after being told
by his wife ‘I’m not competent enough to
look after the baby’, an experience which, as
a father to two small children, he described
as ‘pretty devastating.’ R36 (aged 59), also
highlighted his upset and distress, when
following the onset of hypoglycaemia
unawareness and frequent collapses in
public, he noticed that:
my kids were quite small, they’d go round
to each other’s houses, and slowly but
surely, other kids didn’t come to our house
and I felt, you know, parents have got to be
concerned about their children . . . most
denied it but it was obvious that, you
know, their kids weren’t coming to play
with my kids.
Getting on with life
While most participants described imposing
and experiencing restrictions in order to
minimise the risks posed by their lack of
symptom awareness, there were a few who
had made conscious efforts not to allow
their inability to detect symptoms of hypoglycaemia to disrupt or affect their lives and
careers. Most typically, participants
described using food prophylactically to
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Rankin et al.
185
raise blood glucose levels and thereby avoid
having a hypoglycaemic episode. This
included R19, a healthcare worker, who
reported taking evasive action at work so
she could perform her job effectively and
avoid embarrassing herself in front of colleagues, despite her concerns that elevating
her blood glucose would increase her risk of
long-term complications:
if I need to do a big presentation or
something like that . . . I might eat and
just not take any insulin to allow for that
and then, at the end of the presentation,
you know, my sugars will be about 30
[mmol/L] but hey, you know, you kind of
got through the presentation.
R9 (aged 39) likewise described making
stoical attempts to continue working, in
her case by maintaining a stock of glucagon injections in the office, which she
would self-administer if self-monitoring
revealed that her blood glucose levels
had dropped low. She also described the
somewhat matter-of-fact way in which she
informed her work colleagues of her
actions and their consequences, such as
when:
I did my blood sugar and it was low, it
wasn’t even registering [on my blood
glucose meter], so I took my lucozade
etc. and I just sat on the floor and told
them [colleagues] that I was going to
have a fit because I knew what was going
to happen. So I just lay down and
had one.
In several extreme cases, participants
described how they ‘got on with life’ (R24)
by simply downplaying and sometimes even
ignoring their condition and its potential
consequences. A particularly pertinent
example was provided by R36 (aged 59),
who, in the first few years following onset of
hypoglycaemia unawareness, described
having had to take early retirement as he
was having ‘so many hypos in the office’ and
being ‘cossetted’ by his wife and children
who ‘encouraged me not to do things.’
Following the break-up of his marriage,
which he blamed on his inability to detect
hypoglycaemia, and a diagnosis of depression, R36 described how he had ‘decided on
this sort of policy, of you know, I’d take the
hypos and start getting my life back
together.’ For this man, this entailed ignoring his family’s advice and reinstating a
former hobby: solo fell-walking, despite the
risks this posed to his health: ‘I walk up hills,
and I don’t want to have a hypo, but if I
have one, I have one.’ Indeed this participant reported several instances where he had
endangered his own life: ‘I’ve passed out
while walking in the snow; in quite isolated
areas . . . the worst, worst ones for me are
where I, I come round but I have, I’m
paralysed and I can’t move.’
In other examples, R26 (aged 52), who
worked in a physically demanding, manual
occupation which entailed ‘on call’ visits to
different worksites, highlighted his determination not to let his condition ‘rule my
life’, in this specific instance by remaining in
paid employment. To do this, he had
decided not to disclose his diagnosis to his
employers and he also downplayed his
condition to colleagues he met on site
visits: ‘When I start the job, I say, I
always say to them, ‘whatever happens to
me, you don’t phone an ambulance.’
They’ve got enough to do without looking
after me. ‘Just stick a can of coke in front of
me, a bottle of pop, whatever, and leave me
to it.’ R26 highlighted various incidents
when, as a result of undertaking heavy
physical labour, being unable to detect his
blood glucose dropping, and being left
unsupervised, he had had severe hypoglycaemic episodes at work, such as when
‘I collapsed on the stairs, woke up about
an hour later’, and on another occasion
‘when I ended up in hospital’, after he had
lain unconscious and undiscovered on a
floor for several hours.
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Chronic Illness 10(3)
External indicators of hypoglycaemia
Frequent blood glucose readings. Due to their
inability to detect signs and symptoms,
many participants described using and
relying on the results of frequent selfmonitoring of blood glucose to alert them
to the onset of hypoglycaemia: ‘I don’t
know when I’m having a hypo so I tend to
check my bloods six to eight times a day
and this gives me an idea of what’s going
on’ (R13, aged 56). However, while many
considered self-monitoring of blood glucose
an effective method of detecting hypoglycaemia, there were some who described
forgetting to test entirely, or how they
could: ‘become so engrossed in what I’m
doing that I do have to stop sometimes and
think, ‘‘Oh God, I better check myself to see
how I am’’’ (R10, aged 44). This could lead
to situations where, by the time participants
realised they needed to test, low blood
glucose meant they were too confused and
disoriented to administer treatment: ‘I
wouldn’t get a warning sign until it was
virtually too late. I would probably be 1.8,
1.5, 1.2 [mmol/L], you know . . . and I would
not be able to think straight and to actually
treat it’ (R27, aged 63). In R27’s case, going
‘too low’ meant that his wife had had to
administer glucagon injections. Some also
speculated that their inability to remember
to test might itself have resulted from the
effects of their blood glucose levels dropping, as having low blood glucose levels
could cause them to ‘forget everything
around you’ (R26).
Reliance on others. Many participants, especially those who struggled to make effective
use of self-monitoring of blood glucose, also
described relying, sometimes almost
entirely, on partners, family members and
sometimes colleagues to detect visible warning signs or changes in their behaviour to
alert them to the onset of hypoglycaemia.
Participants described how these significant
others acted as ‘an extra pair of eyes’ (R1) to
detect a range of signs: ‘I might be slurring
my words or they just, or my eyes, they’ll
notice my eyes’ (R2) and/or behaviours
indicative of hypoglycaemia: ‘she’ll [partner]
notice that I’ve gone a funny colour or that
my processing speed slows dramatically’
(R28). Hence, participants often preferred
to remain in others’ close proximity with
several reporting feeling anxious and afraid
when left unsupervised: ‘I don’t like to be on
my own because you never know, there’s no
pattern to it, you never know, do you?’ (R2,
aged 56).
However, others, while heavily reliant
upon family/friends, expressed concern
about becoming a burden: ‘I like them
[sons] being here [to check on me] but I feel
guilty that they have to be here and it’s not
much fun for a couple of young lads’ (R8,
aged 46). Furthermore, some, such as R30,
who had had hypoglycaemia unawareness
for over 15 years, described how receiving
overly attentive support could sometimes
lead to resentment: ‘if I’m upstairs too
long . . . then he’s [husband] straight up
after me, and I know that they do it ‘cause
they care . . . but I feel belittled, humiliated,
like I’m the, I’m the child’ (R30, aged 45).
Reactions to people’s prompts to treat. While
nearly all participants valued others’ roles in
detecting signs of hypoglycaemia, many also
reported responding in an ‘argumentative’
(R17), ‘aggressive’ (R34) or ‘feisty’ (R16)
manner when family members prompted
them to test and treat. This included R22
who refused to perform self-monitoring of
blood glucose when encouraged to do so by
his partner: ‘I’d always say ‘‘I’m absolutely
fine, don’t tell me what to do’’’ and R9 who
described how: ‘I can get a bit bolshie when
I’m having a hypo . . . so I’m sat there with
my arms crossed and my mouth shut and
won’t take any food and I’ll be sat there
going, ‘‘no, no’’’. In extreme cases, participants reported physically ‘fighting’ (R13)
others off because, when their blood glucose
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187
was low, they perceived their attempts to
help as hostile:
No matter how polite they are or whatever,
it feels aggressive . . . your body’s in protection mode so . . . somebody approaching
you has to be very very careful. . . . when I
was younger, I could have easily hit somebody, no, no messing (R26).
Problems
recollecting
hypoglycaemic
events. Notably, while some participants
could recollect their hostile and sometimes
violent behaviour, there were others who
could not recall what happened when they
had hypoglycaemia: ‘that’s the problem,
when I do get to that state my memory
gets really impaired’ (R5, aged 26), some of
whom were only made aware of their actions
by others. This included R22, a man in his
seventies, who reported routinely collapsing
in his front garden and only regaining
consciousness after being revived by neighbours or an ambulance crew:
one neighbour said to me on one occasion,
he said it took three of us to hold you
down.
[Interviewer: ‘Really?’]
Yes and that disturbed me because, you
know, I’m a big fellow, but I’m not a
strong fellow, I’m not an athletic person,
and three of them, two of them at least,
were bulky people.
Preferred negotiating styles. Some participants
also highlighted ways in which they could be
successfully encouraged to respond appropriately when other people detected signs of
hypoglycaemia. R13, for example, expressed
how she was more likely to comply with
calm and directive forms of communication:
‘my son is the best one at it, he will sort of
like talk to me quietly and say, ‘‘Mum, I
think you need some lucozade’’, or ‘‘you
need a biscuit or something’’. If I’m spoken
to like that then I respond quite well, but my
husband is a bit loud and aggressive . . . he
hands me over what to do and that’s the
worst thing to do’. Likewise, R29 highlighted her preference for the composed
and directive approach used by her daughter
because low blood glucose affected her
ability to respond appropriately to her husband’s anxious, questioning stance:
She’s just very quiet and calm. [. . .] So we
might be shopping and I’ll say, ‘oh, I think
I’m going hypo’ and she’ll say, ‘yeah, I
think you are’ and I’ll say, ‘right, I’ll just go
and pay for this’ and she’ll say, ‘no, we’re
going to go and eat now’ [. . .] My other
half . . . he will tend to start asking me
questions . . . ‘what do you want, how
much do you want, what shall I get?’ and,
of course, you know, I’m not in a fit state
to answer.
Advice from health professionals
When asked about their contact with health
professionals,
very
few
participants
described raising concerns about their
unawareness of hypoglycaemia during consultations. In some instances, this was
because, as highlighted above, participants
were keen to downplay the significance and
impact of not being able to detect hypoglycaemia, in order to hold down employment
and/or feel able to pursue valued recreational activities. An additional barrier to
seeking help and advice arose from some
participants’ perception that hypoglycaemia
unawareness was an untreatable condition:
‘I’ve been told, once you’ve lost it [awareness of symptoms], you’ll never get it back’
(R19) and/or an inevitable and irreversible
consequence of having had diabetes for a
long time: ‘to me hypo awareness is part of
long-term diabetes. It’s caused by the insulin
which I cannot stop because I would die, so
it’s just something I have to put up with’
(R13).
When participants had been approached
by health professionals to discuss their
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Chronic Illness 10(3)
unawareness of hypoglycaemia they
described this input as being mostly focused
on: ‘the medical side of it, not the actual
living side of it’ (R26). Principally, participants reported being given advice on managing and/or restoring symptoms. Notably,
no participants described having ever been
invited or encouraged by healthcare professionals to discuss the emotional aspects of
living with hypoglycaemia unawareness, the
psycho-social aspects of dealing with life
changes or how they could utilise family and
friends’ support more effectively.
Discussion
This is one of the first qualitative studies to
explore experiences of hypoglycaemia
unawareness amongst people with Type 1
diabetes. As we have shown, participants
experience an inability to detect hypoglycaemia not simply as a clinical problem but
as one which can have a major impact on
their confidence, careers and everyday lives.
Specifically, we have seen how an impaired
awareness of hypoglycaemia can affect people’s relationships with family, friends and
work colleagues, due to their increased
dependency on others to help detect and
treat hypoglycaemia, and also because of
their sometimes inappropriate, argumentative and aggressive behaviour during episodes of hypoglycaemia, behaviour which
has also been documented by Ritholz and
Jacobsen.22 To minimise the risks posed by
their condition to themselves and also
others, participants often made, or are
sometimes forced to make, changes to their
lives; including: stopping working, as
Ogundipe et al have also observed;23
restricting physical activity; increasing their
use of blood glucose self-monitoring; extensively planning time spent away from home;
and minimising situations where they were
left alone. Our data, alongside that reported
by Böheme et al,24 also show that people
may opt to raise blood glucose in order to
minimise risk of hypoglycaemia, a practice
which can increase their risk of long-term
complications.25–27
While, in most cases, participants experienced hypoglycaemia unawareness as a form
of ‘biographical disruption’,28 which
impacted negatively on their careers, identities, lifestyle choices and relationships with
others, there were some who attempted to
achieve biographical maintenance or reconstruction by downplaying the ‘meaning’ and
‘consequences’ of their condition.29 While
such strategies enabled participants to
remain in employment and/or to pursue or
reinstate activities which they saw as important to their self-esteem, downplaying or
ignoring the potential impact of their inability to detect hypoglycaemia also meant they
could expose themselves to situations where
they compromised their health and safety, as
well as, potentially, causing distress to
others.
Indeed, as participants’ accounts have
also served to highlight, hypoglycaemia
unawareness is a condition which may not
only affect their own lives but also the lives
of family members and other people in their
social networks. Mirroring and reinforcing
findings from this study, a companion study
undertaken with family members of people
with hypoglycaemia unawareness30 has
shown that these people also undergo a
form of biographical disruption following
onset of the condition. Family members, for
instance, reported having to restrict their
own lifestyles, career choices and activities
in order to be present to help detect and
manage hypoglycaemia. Family members
also highlighted the upset and distress
which would result from attempting to
help the person with hypoglycaemia
unawareness administer hypoglycaemia
treatments on occasions when they exhibited
hostile, aggressive and sometimes very violent behaviour. In extreme cases, they
reported being very fearful for their own
safety.30 In addition, some concerns were
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Rankin et al.
189
raised that, by virtue of patients not always
being able to recall incidents when they were
hypoglycaemic, they might be underreporting their hypoglycaemia in diabetes
consultations and hence not receiving
appropriate clinical and social support.30
Given the impact that unawareness of
hypoglycaemia can have both on patients
and their family members, it is clear that
clinical effort should continue to be
invested in developing and offering interventions which help patients restore their
awareness of hypoglycaemia. It is encouraging, therefore, that several experimental
studies have shown that hypoglycaemia
unawareness can be reversed through strict
avoidance of hypoglycaemia,14-16,31 albeit,
extensive professional input may be
required, and none of these studies have
examined long-term outcomes. However,
our findings, alongside those reported by
Rogers et al.17 highlight unhelpful perceptions and beliefs which may inhibit people
from soliciting health professional input
and/or attending restoration interventions.
Specifically, some patients’ wished to
downplay the significance and impact of
their condition and others held a potentially erroneous perception that their loss
of awareness of symptoms of hypoglycaemia is an inevitable, and hence, irreversible aspect of having diabetes.
Given that some participants struggled
to recall events when hypoglycaemic, and
unreliability of patients’ reports of hypoglycaemia observed in another study,32
health professionals need to be aware that
patients may under-report hypoglycaemia
when they attend consultations and not
actively seek help and support. Hence
proactive input and support may need to
be offered in consultations. Participants’
accounts also highlight a need for more
emphasis to be given to addressing the
emotional and psychosocial issues encountered by those living with the condition.
Specifically, patients may need input and
support dealing with the major life changes
which can result from being unaware of
hypoglycaemia, such as giving up or leaving employment, and from the loss of
confidence and distress which can result
from some of the traumatic events, following loss of symptom awareness, which the
people in our study described, and which
have been documented elsewhere as causing patients upset and psychological distress.33 Furthermore, participants’ accounts
offered useful insights into ways to promote better responses to others’ prompts
to test or treat and hence potentially,
better management of hypoglycaemia.
Participants described both helpful and
unhelpful encouragement from family and
other people to perform self-monitoring of
blood glucose and take recommended
treatments, with most highlighting the
benefits of calm and directive styles of
approach. Healthcare professionals should
consider the potential benefits of these
approaches and recommend them to
family members or suggest that people
with hypoglycaemia unawareness encourage their use by family and friends.
Our analysis highlights the benefits of,
and need for, people with hypoglycaemia
unawareness to be encouraged to perform
frequent and regular self-monitoring of
blood glucose if they are not doing so
already. However, as our findings also illustrate, effective use of self-monitoring may be
limited by cognitive impairment preventing
testing when hypoglycaemia occurs.
To address this problem, our findings lend
support to others’ recommendations that
some people who are unable to detect
hypoglycaemia might benefit from using
continuous glucose monitoring systems9
that sound audible alarms to alert users of
low blood glucose and which may be helpful
among those who are motivated to
take action to address the condition17 or
who are concerned about burdening family
members.
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190
Chronic Illness 10(3)
Strengths and limitations:
Recommendations for future research
A key strength of the study is the use of an
exploratory design which has enabled us to
learn erstwhile unknown aspects about the
experiences and impact of an inability to
detect symptoms of hypoglycaemia on people’s lives. However, a potential limitation is
the study’s restriction to two diabetes centres in the UK with academic interest and
clinical expertise in the assessment and
management of hypoglycaemia. As this
might limit the potential generalisability of
the findings, subsequent qualitative studies
could explore the accounts of people
recruited from a range of diabetes centres,
including those with less-established expertise in managing hypoglycaemia. Future
quantitative work could also usefully determine the extent of the problems identified in
this study; for instance, by measurement of
stress, anxiety and depression in a larger
sample of people with hypoglycaemia
unawareness.
Conclusions
Hypoglycaemia unawareness can result in
traumatic and life-changing effects for those
who have the condition. Health professionals should give more emphasis to the
emotional and psychosocial difficulties
reported by people with the condition and
emphasise
the
successful
strategies
employed by family members to help
people identify symptoms and treat
hypoglycaemia.
Acknowledgements
We are very grateful to the people who took part
in this study and to Dr Celia Emery for study
management support. We would also like to
thank Carla Gianfrancesco, Sue Beveridge,
Philippa Marks and Victoria Francis for their
support.
Conflict of interest
The authors declare that they have no conflict of
interest.
Funding
This article presents independent research funded
by the National Institute for Health Research
(NIHR) under its Programme Grants for Applied
Research Scheme (RP-PG-0606-1184). The views
expressed in this article are those of the authors
and not necessarily those of the NHS, the NIHR
or the Department of Health. This article refers
to: ‘Improving management of type 1 diabetes in
the UK: The DAFNE programme as a research
test bed’ [Grant number: RP-PG-0606-1184].
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