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Original article

Living with type 1 diabetes and an insulin

pump: a qualitative insight
Daniel N Grose1,2 Abstract
BSc, MD This study aims to provide a qualitative insight into the experiences of people living with
2,3 type 1 diabetes mellitus (T1DM) who use an insulin pump, and thus inform diabetes care
Casey L O’Brien practices including psychological support programmes.
BA (Hons), MSc (Counselling Psychology)
Patients attending a specialist T1DM outpatient clinic were invited to share their
Elisa K Bongetti1,2 experience of living with an insulin pump. Participants took part in either a semi-
BSc, MD structured interview or a focus group, which were audio-recorded and transcribed. The
data were analysed using a framework approach based on the Optimal Health Wheel
Hannah M Corcoran2 comprised of six domains including Physical, Social, Intellectual, Emotional, Occupational
MBBS and Spiritual values.
A total of 15 individuals participated in a semi-structured interview (n=7) or a focus
Margaret M Loh4 group (n=8). Participants were aged between 20 and 60 years with a duration of pump
RN, GCertDiabEd, MNursPrac use ranging from 7 weeks to 9.5 years; the majority were female (n=12). A total of 19
sub-themes were identified under the six Optimal Health Wheel domains.
Glenn M Ward4
BSc, MBBS, DPhil (Oxon), FRACP, FRCPath
It was concluded that the Optimal Health Wheel is a useful framework for qualitative
data analysis. Its application synthesised some new themes (emotional–physical interplay,
David J Castle2,3 self-esteem and personality, and sense of self), as well as building on previously described
MBChB, MSc, CGUT, MD, DLSHTM, FRCPsych, themes such as self-management and the pump’s physical presence. These provide insight
FRANZCP into the lives of people living with T1DM and an insulin pump. Copyright © 2018 John Wiley
& Sons.
1
St Vincent’s Clinical School, Melbourne Medical Practical Diabetes 2018; 35(5): 171–177
School, The University of Melbourne, Parkville,
Victoria, Australia
2
Key words
St Vincent’s Mental Health Service, St Vincent’s
type 1 diabetes mellitus; T1DM; continuous subcutaneous insulin infusion; CSII; insulin pump;
Hospital Melbourne, Fitzroy, Victoria, Australia
3
Department of Psychiatry, The University of
qualitative research; qualitative methods; Optimal Health Program
Melbourne, Fitzroy, Victoria, Australia
4
Department of Endocrinology and Diabetes, Introduction more likely to experience better gly-
St Vincent’s Hospital Melbourne, Fitzroy, Victoria, Living with type 1 diabetes mellitus caemic control and quality of life.5
Australia
(T1DM) requires a comprehensive Ritholz et al.6 demonstrated that
set of self-management strategies to active rather than passive participa-
Correspondence to: deal with the myriad of challenges tion in T1DM self-management was
Daniel Grose, c/o Casey O’Brien, St Vincent’s Mental it presents in day-to-day life. In associated with improved glycaemic
Health Service, PO Box 2900, Fitzroy, Victoria, addition to the physical conse- control. This active approach is
Australia 3065; email: Casey.OBrien@svha.org.au quences, the mental health and harnessed by discussions with health
wellbeing of people living with this care professionals (HCPs) and the
Received: 12 June 2018 condition may also be affected. An identification of psychosocial issues
Accepted in revised form: 13 July 2018 Australian study found that 28% of such as mood, quality of life, social
people with T1DM lived with severe support and self-efficacy that may
diabetes-related distress. 1 High complicate T1DM self-management.
rates of self-reported anxiety (27%) These findings highlight the need
and clinical depression (12%) have for a comprehensive management
also been reported, although these approach, with a strong focus on
rates vary across studies.2,3 The identifying and managing the key
association between diabetes and psychosocial issues affecting people
its psychological burdens appears living with T1DM.
to be a vicious cycle. Diabetes- Continuous subcutaneous insu-
related distress compounded by lin infusion (CSII) therapy or the
co-morbid depression amplifies the ‘insulin pump’ is emerging as a
challenge of optimising glycaemic mainstay in the management of
control.4 Therefore, the optimal T1DM. However, there are limited
management of T1DM must con- studies examining the psychosocial
sider psychosocial wellbeing as part aspects of this treatment approach.
of usual medical care. Two systematic reviews suggest a
People with diabetes who are possible improvement in quality
more informed and motivated are of life among people using CSII

PRACTICAL DIABETES VOL. 35 NO. 5 COPYRIGHT © 2018 JOHN WILEY & SONS 171

Original article
Living with type 1 diabetes and an insulin pump
therapy, though the results from
individual studies were inconsistent
and employed poor methodology.7,8
More recent research remains
promising; for example Shaban et
al.9 suggest CSII therapy decreases
the disease burden irrespective of
HbA1c. Qualitative research is also
needed to identify the key psycho­
social issues at play. The role of
qualitative research in behavioural
diabetes is now well established
but the few published studies are
largely focused in the UK, the USA
and Sweden.10,11
One of the first studies examin-
ing patients’ experiences of CSII
therapy was a mixed-methods study
by Garmo et al.12 which concluded
that improved glycaemic control
does not necessarily correlate with
improved treatment satisfaction.
Later studies explored themes
linked to treatment satisfaction
including, inter alia: a new-found
freedom and flexibility with CSII
therapy; the supportive role of
family; a learning curve when
transitioning from multiple daily
insulin injections (MDII); technol-
ogy dependence; and new chal-
lenges associated with the pump’s
attachment to the body.13–15 The
positives and negatives of CSII
therapy were succinctly synthesised
as both a lifeline and a shackle in a
more recent study by Garmo et al.16
Further understanding these
psychosocial aspects of T1DM can
help inform psychological support
services including self-management
programmes such as the Optimal
Health Program (OHP). The
OHP is a holistic wellbeing-focused
self-management programme for
people living with chronic illness
and is proposed to be beneficial for
people living with T1DM.17
This qualitative study aims to
provide an Australian insight into
the experiences of people living
with T1DM and the psychosocial
impact of CSII therapy. It also aims
to elicit the attitudes and percep-
tions of participants regarding
their physical, psychological and
social health. This knowledge could
inform HCPs about the challenges
for people living with T1DM and
the CSII therapy, as well as provide
a basis for a holistic approach to
optimising care.
172 PRACTICAL DIABETES VOL. 35 NO. 5 COPYRIGHT © 2018 JOHN WILEY & SONS
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Strategy Description
Documentation Each analytical stage was clearly recorded for transparency
Researcher The second author (CO) independently reviewed the transcription, coding
triangulation and thematic analysis stages for consistency and accuracy. All research
assistants provided feedback on the interpretations, arriving at congruence
Participant Feedback on a preliminary version of the results was sought from a sample
triangulation of participants to ensure accuracy. The themes were revised accordingly
Use of quotes Participants’ quotes have been included as exemplars of each theme,
providing evidence for the interpretation
Data saturation Participants were recruited until the point where no new themes
emerged. This was independently reviewed by the second author (CO)
Table 1. Strategies to ensure rigour
Research design and methods groups began with a demographic
Design questionnaire and then comprised
This study was part of a larger the same semi-structured format
mixed-methods study aimed at assess- involving eight questions exploring
ing the mental health of people the participants’ experiences of
living with T1DM and the need living with T1DM and CSII therapy
for psychological support. Ethics (see Appendix 1, available online
approval was received from the St at www.practicaldiabetes.com). Each
Vincent’s Hospital (Melbourne) focus group and interview was
Research Governance Unit (refer- audio recorded.
ence number LRR 060-12).
Analysis
Recruitment An adaptation of the five-stage
The study was conducted at a framework approach, as described
tertiary hospital in Melbourne, by Smith and Firth,18 was used to
Victoria, Australia. During 2014 to analyse the data. Initially, the
2016, eligible participants attend- audio-recordings were transcribed
ing a specialist adult T1DM clinic and imported into the qualitative
who used CSII therapy were data software, Nvivo (QSR Inter­
approached by a research assistant national, Victoria, Australia). The
in the waiting room. They were lead author (DG) then undertook a
invited to share their experiences process of data immersion which
of living with T1DM and using CSII involved thorough familiarisation
therapy by participating in an with all data. The transcripts were
interview or focus group. The then coded based on an a priori
T1DM clinic has approximately 200 framework, namely the Optimal
patients aged between 18–80 years, Health Wheel. This was chosen
with a mean age of 40 years. It is by the authors because of its
estimated that 23% of all attendees holistic consideration to optimising
use CSII therapy. health comprising six domains,
namely Physical, Social, Intellectual,
Interviews Emotional, Occupational and
The focus groups were co-facilitated Spiritual (as defined in Appendix 2,
by a research assistant and a research available online at www.practical
psychologist. The interviews were diabetes.com).17 Thematic analysis
facilitated by one of three research was then applied to identify sub-
assistants. All three research assis- themes for each domain. Themes
tants were final year medical stu- were compared both within and
dents (two female, one male) who across each transcript. In addition,
interviewed the participants they the relationships between themes
recruited. The same research psy- were explored until a succinct syn-
chologist (CO) and psychiatrist thesis was concluded. A number of
(DC) supervised all research assis- strategies were deployed to ensure
tants. All interviews and focus rigour, as described in Table 1.
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Original article
Living with type 1 diabetes and an insulin pump

Results part in diabetes education facili- Occupational domain of

A total of 15 participants were tated a better understanding and optimal health
recruited; seven participated in a a deeper insight into their life Lifestyle freedom. Participants
semi-structured interview and eight with T1DM. described the significant impact of
in a focus group. Participants were ‘I think I understand my diabetes T1DM on their lifestyle. However,
aged between 20 and 60 years with a a bit better now.’ CSII therapy was perceived to have a
duration of pump use ranging from 7
weeks to 9.5 years; the majority were Characteristic Participants % Pump users
female (n=12). The demographic attending
data of the participants involved in No. % T1DM clinic
this study and that of all patients of
the T1DM specialist clinic are summa- Gender Female 12 80% 74%
rised in Table 2. The thematic analysis Male 3 20% 26%
identified 19 sub-themes associated
with the six domains of the Optimal Age group 18–29 years 2 13% 34%
Health Wheel (Figure 1).
30–40 years 8 53% 32%
Intellectual domain of >40 years 5 33% 34%
optimal health
Diabetes education. Participants found Time living with T1DM <10 years 1 7% –
that the transition phase from MDII to
CSII therapy required a significant 10–25 years 6 40% –
investment in time and resources to
>25 years 8 53% –
build on their diabetes knowledge-base
and be comfortable with their new Time living with pump <2 years 4 27% –
therapy. Carbohydrate counting was a
new but important concept for many 2–5 years 4 27% –
during this phase. It was also acknowl-
>5 years 7 47% –
edged that diabetes education was key
to optimising self-management. Table 2. Demographic characteristics of participants and those attending the type 1 diabetes clinic
‘I mean once you learn all of it, it’s
almost like re-learning diabetes again.’
This learning process involved
engagement with a variety of resources
including diabetes educators, doctors EMOTIONAL INTELLECTUAL
and dietitians, as well as workshops, Mental burden Diabetes education
diabetic support groups and pump Emotional–physical Diabetes insight
manufacturers. Less formal means of interplay
education such as friends and Self-esteem and personality
researching the internet were also Fear of complications
found to be informative.
‘We’ve got other supports through
other people with diabetes, which is prob-
ably the best source of information.’ SOCIAL PHYSICAL
Therapeutic relationships Self-management
Diabetes insight. Participants described Personal relationships Pump therapy
a journey of life-long learning whereby Communal relationships Additional health
observing one’s condition allowed Society challenges
unique nuances to be learnt. This led
to the realisation of new insights into
their condition through a trial-and- SPIRITUAL OCCUPATIONAL
error approach as well as reflecting on Sense of self Dietary flexibility
past experiences. Perspectives and Lifestyle freedom
‘The learning curve, in terms of how mindset New restrictions
quickly can I learn and adjust to things, Future outlook
[has] been the hardest thing in terms of
finding out what I can and cannot get
away with and how quickly I can learn
to make sure that I’m okay with doing
certain things.’
For some participants, embark-
ing on CSII therapy and taking Figure 1. The six domains of the Optimal Health Wheel with corresponding sub-themes

PRACTICAL DIABETES VOL. 35 NO. 5 COPYRIGHT © 2018 JOHN WILEY & SONS 173

Original article
Living with type 1 diabetes and an insulin pump
positive effect, by improving free-
dom and flexibility, including ease
with managing diabetes in social situ-
ations, fewer hypoglycaemic episodes
when exercising, greater capacity to
do household chores, improved
employment performance and more
confidence to travel.
‘It gives me a large amount of flexi-
bility with what I want to do. Being able
to move around with a lot more ease if
I’m out, or whether it’s a day or a couple
of days whatever the case may be, it’s
always on me.’
Dietary flexibility. For many partici-
pants, diet was a key focus of T1DM
self-management. CSII therapy was
found to promote greater flexibility
with regard to food choices and tim-
ing of food consumption as well as
making it easier for people with
T1DM to dine out socially. It also
resulted in less regulated adminis-
tration of post-prandial insulin.
‘You’re much more flexible about
food. If you don’t have time for eating, it
doesn’t matter! You don’t have a hypo
because you didn’t eat lunch at a specific
time. That’s really the main difference is
the flexibility.’
New restrictions. Participants
described new restrictions on their
lifestyle since commencing CSII
therapy. Female participants com-
mented on difficulties with con-
cealing the pump when wearing
certain clothing. The pump’s phys-
ical presence could prove obtrusive
when exercising and many partici-
pants were frustrated that their
choice of pump wasn’t waterproof,
especially when visiting the beach.
Some of these restrictions were
overcome by temporarily discon-
necting the pump, although this
created new challenges.
‘When I go in the water, I just take
[the pump] off. The only issue is that
sand can get caught in it. I’m not going
to get the sand out. I just tell my friends
to go to the beaches with the bigger sand
so it can’t get caught in it.’
Social domain of
optimal health
Therapeutic relationships. All par-
ticipants appreciated their rapport
and ease of access with HCPs and
pump manufacturers. However, for
many this was overshadowed by
174 PRACTICAL DIABETES VOL. 35 NO. 5 COPYRIGHT © 2018 JOHN WILEY & SONS
encounters with HCPs who failed to
express empathy.
‘We’re humans first, diabetics second.
We’ve all got jobs or families or whatever,
and in speaking with my diabetic friends
they won’t tell their endocrinologist the
full story because the endo doesn’t look at
the issues of balancing diabetes amongst
life. They just go “bad diabetic”.’
Personal relationships. The vital
role of family and friends in
supporting someone living with
T1DM was acknowledged. Often
family and friends make many
sacrifices and share the burden or
responsibility of living with a
chronic illness. In times of need
or ill health, these relationships
acted as a safety-net because many
participants felt vulnerable.
‘Mum would come and check on me
if she thought there was something wrong
and I wasn’t awake at my normal hour
or something, so it was kind of like
that safety-net.’
Communal relationships. Many part­
icipants took comfort in being able to
share their experiences with others
who live with T1DM. These relation-
ships not only provide support and
information but the relatability pro-
vided reassurance. Communal rela-
tionships often originated through
diabetes organisations or attendance
at diabetes camps as a child. The
opportunity to attend a camp was
frequently mentioned as a very valua-
ble experience (n=15).
‘Being around other people that were
all the same as you. That really helped
hone in that you’re not the only one
out there.’
Society. Interactions with society
often provided a source of frustra-
tion for participants because they
felt there was a general lack of
understanding of T1DM and many
people are quick to make judge-
ments or offer presumptuous advice.
There were also differing levels
of societal acceptance of pump
use. Many participants described
instances of annoyance when T1DM
was conflated with type 2 diabetes
mellitus (T2DM), which brought
issues of stigmatisation.
‘Another thing that really annoys me
is the way people say “diabetes” and that
there’s no distinction. And you’re like I
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didn’t do this to myself! I didn’t overeat.
I exercised and everything. I didn’t
cause this!’
Emotional domain of
optimal health
Mental burden. Living with T1DM
took a toll on participants’ emo-
tional health and wellbeing. The
impact of the pump is multifaceted
and complex. In some instances, it
relieves the stress of essential yet
constant self-management, but it
also acts as a source of frustration
when faults occurred. For three
participants, the mental burden of
living with T1DM was perceived to
contribute significantly to a period
of depression.
‘I went through a stage of really bad
depression about four years ago and that
was quite hard. But I think that was also
a bit of just being over having to do
everything all the time, every day.’
Participants’ perceptions of the
mental burden associated with
T1DM changed through different
stages of their journey. When com-
mencing CSII therapy some partici-
pants described the need to be
emotionally prepared in order to
cope with the change in self-manage-
ment. Additionally, participants
struggled during the transition phase
from parental care to independence
with self-management.
‘[You] definitely have to be mentally
ready to wear something 24 hours a day
and have a constant reminder of
your diabetes.’
Emotional–physical interplay. There
were many reports of the strong link
between emotional and physical
health. Participants noticed the
influence of variations in glycaemic
levels on mood.
‘When I’m low I get really grumpy.’
However, there was a reciprocal
relationship whereby fluctuations
in mood can also influence glycae-
mic control.
‘The effect of the emotions – like I
said about my brother being institution-
alised and every time I went to see him I
would have the worst hypo. If I ever had
a really emotional family time like a
death in the family or something like that
[it] just wreaks havoc.’
Most participants expressed an
improved sense of wellbeing since
commencing CSII therapy, which was

thought to originate from the admin-
istration of a basal rate of insulin.
‘You’ve got the medication going in
the whole time so you’ve got that baseline
there, so you feel better on the whole.’
Self-esteem and personality. Partici­
pants reported that living with
T1DM has a significant impact on
their self-esteem by being conscious
of feeling different from others.
‘I used to look at myself like damaged
goods. And would expect people to expect,
not less from me, but I wouldn’t expect as
high from people I had in my life because
of it. So I’d hang out with idiots who’d
treat me like rubbish because [I thought]
I don’t really deserve [any better].’
One interviewer made explicit
observations on participants’ person-
ality and commented on their
apparent strong-will and confidence.
These observations were also sup-
ported by a participant’s own
reflections of her personality. CSII
therapy also had an influence on her
way of dealing with life stressors.
‘Everyone who knew me before I got a
pump noticed a huge difference. My
mum said to me “I’ve finally got my
daughter back” because when I got [the
pump] my whole personality, everything
changed. You’re just so moody from [your
blood glucose level] being up and down.’
Fear of complications. Many partici-
pants felt vulnerable compared
to the general population and
described a fear of hypoglycaemic
episodes, pump malfunctioning and
diabetic complications.
‘I have a fear of losing my legs when-
ever I get a cut.’
Spiritual domain of
optimal health
Sense of self. When considering
whether to embark on CSII therapy,
participants gave much thought to
the prospect of being constantly
connected to and dependent on
technology. This instigated the recon-
ceptualisation of their self-concept to
incorporate the pump as an append-
age of the body. For some partici-
pants, they felt defined by their
T1DM when using the pump because
it acted as a constant visual and tactile
reminder. Other participants felt
more frequently reminded of their
condition when using MDII because
of the conscious effort it required.
PRACTICAL DIABETES VOL. 35 NO. 5 COPYRIGHT © 2018 JOHN WILEY & SONS
Living with type 1 diabetes and an insulin pump
‘I went through a stage where I really
hated [the pump]. It being on my side all
the time was like I had to carry a little
robot to stay alive. That really annoyed
me, but I got over that quite fast.’
Many participants acknowledged
that they felt different from the gen-
eral population. Despite this, they
strived for a sense of normality; the
pump assisted in this quest by reduc-
ing the conscious effort required for
self-management allowing partici-
pants to forget about their condi-
tion at times.
‘[The pump has] given me a feeling
I’m not a diabetic.’
Perspectives and mindset. Most par-
ticipants were very accepting of their
T1DM diagnosis, although they
described times in their past when
this had varied. Often during their
youth, participants reported they felt
a need to rebel against the restrictions
of living with T1DM. They acknowl-
edged that their attitudes towards
T1DM influenced their self-manage-
ment. Yet, there was an underlying
stoicism during trying times.
‘[Diabetes] is restrictive, it’s annoying,
but there’s nothing you can do about it.
You just got to get on as best you can really.’
Future outlook. There were many
variations among participants’
future outlook. However, CSII ther-
apy generally brought more hope
and made the future look much
brighter than previously.
‘I feel that [the pump] has given me
a lot more hope for the future, [now] that
I have better control.’
Physical domain of
optimal health
Self-management. The self-manage-
ment of T1DM was viewed as a crucial
yet burdensome necessity. It was per-
ceived as requiring much attention, at
the least including frequent blood
glucose testing and the administra-
tion of insulin. This self-management
is further complicated by the dynamic
state of T1DM.
‘In my instance it seems nothing is
ever quite stable. It’s not like you ever set
and forget. You need to tweak the allow-
ances. What works for six months may
not work for the next six months.’
However, participants explained
that CSII therapy made self-manage-
ment significantly easier and it was
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Original article
more achievable to optimise their
glycaemic control. Other subjective
benefits of the CSII therapy included
improved ability to lose weight,
less bruising, and reduced pain. It
also shifted the control paradigm
whereby pump users reported to
gain power in the management of
their T1DM.
‘You’re in control of it instead of [the
condition] being in control of you.’
Pump therapy. The decision to
embark on CSII therapy considered
a number of factors including the
need to be constantly connected to
technology, recommendations for
pregnancy, and the ability to improve
glycaemic control and minimise the
risk of developing diabetes complica-
tions. However, participants acknowl-
edged that there is no one-size-fits-all
approach for optimal therapy and
the pump is not suitable for every-
one. They also commented on a
number of barriers to accessing
pump therapy including cost, private
health insurance bureaucracy and
living in rural areas.
‘I’ve got a group of four friends who
are all diabetic and one of them is on
[MDII] still. She gets really good sugar
levels on that. She’s not keen on chang-
ing because it suits her really well. I
think she even gets better sugar levels
than what I do sometimes.’
Many participants expressed the
desire to realise future develop-
ments in technology and overcome
some of the challenges that the
pump created, including visibility
issues, technology failures and scar-
ring. There was a general enthusi-
asm for newer technologies such
as continuous glucose monitoring.
Participants also suggested areas of
improvement including reduced
size, waterproofing, improved usa-
bility and multi-device connectivity.
Additional health challenges. Partici­
pants frequently recalled their expe-
riences of hypoglycaemic episodes
and diabetic complications. However,
CSII therapy helped to stabilise
glycaemic control and reduce the
frequency of the hypoglycaemic
episodes. Having said this, many
participants were still expectant of
diabetic complications.
‘The other thing is you could do
everything perfectly, have great control,
175

Original article
Living with type 1 diabetes and an insulin pump
and still suffer eye damage, heart attacks
and cancers that are more predominant
in the disease.’
The relationship between T1DM
with hormones and pregnancy was
raised by a number of participants.
CSII therapy was perceived as bene-
ficial in controlling the impact of
these factors on glycaemic control.
‘I think it was really good during
my pregnancy. During the pregnancy
you change your rates a lot. So it was
really handy.’
The participants realised that
they were not exempt from other
health issues. Many spoke about
their need to juggle their T1DM
with other health conditions and
the difficulties that this created.
‘My HbA1cs have never hit what they
were prior to coeliac disease.’
Discussion
This study highlights many of the
benefits of CSII therapy over MDII
therapy, yet it is not without its flaws.
All participants concluded that CSII
therapy significantly reduced the
self-management and psychosocial
burden of living with T1DM. Despite
being a biased sample with all part­
icipants being current pump users,
these benefits appear to outweigh
the negative aspects and this is why
it is thought that discontinuation
rates of CSII therapy are low.19
The psychosocial benefits, in
addition to previously established
improved glycaemic control, provide
convincing motivation for people
living with T1DM to use CSII ther-
apy. However, the reasons to make
the transition to pump therapy are
not widely published. This study
suggests that they incorporate a
range of factors such as poor glycae-
mic control with MDII, HCP persua-
sion and improved tolerability, with
additional health issues including
pregnancy. Once the decision has
been made to transition, there is
an intensive education phase. This
phase presents an opportunity for
people living with T1DM to gain a
more comprehensive understanding
of their condition. This information
may be empowering enough to real-
ise improved quality of life and
better glycaemic control without the
need to transition to CSII therapy.
Despite widely published evi-
dence that CSII therapy significantly
176 PRACTICAL DIABETES VOL. 35 NO. 5 COPYRIGHT © 2018 JOHN WILEY & SONS
improves glycaemic control, not all
participants in this study perceived
such improvement.8 Everett et al.20
examined the barriers to improving
glycaemic control and suggested
that the fear of a hypoglycaemic
episode was the most significant lim-
iting factor. This fear is compounded
by additional vulnerabilities includ-
ing low self-esteem and body image
issues.21 Despite these vulnerabili-
ties, our study concluded that the
participants were generally very
accepting of their T1DM, and it has
been suggested that better accept-
ance of their condition is correlated
with improved glycaemic control.6
People living with T1DM clearly
value the role of the support team
that surrounds them, including
HCPs, family and friends. In fact,
family and friends often share the
burden of living with T1DM.22
However, the relationship with soci-
ety is not as positive, with issues of
sharing the stigmatisation of T2DM,
a lack of T1DM understanding and a
tendency to offer presumptuous
advice.23 Many participants spoke
about educational activities during
their schooling which aimed at
breaking down these misconceptions
among peers, yet they still described
demeaning experiences from teach-
ers and peers. Additionally, there is
significant variation in the levels
of acceptance of pump use in the
general population ranging from
indifference to hostility.24 Therefore,
there is a need for further strategies
and interventions in order to combat
these negative conceptualisations.
Arguably, pump manufacturers have
an important role to make CSII
therapy more socially understood.
Participants’ interactions with
HCPs also had some negative aspects.
It was disappointing to learn of these
experiences which were largely due
to a lack of empathy, patient-centred
care and a holistic approach to the
management of T1DM.
Many participants spoke about
feeling emotionally vulnerable which
led them on a lifelong quest for a
sense of normality. This phenome-
non has been commented on in
previous research.16,21,25 The pump
appears to assist with this quest by
reducing social vulnerability and
learning to accept one’s self. However,
some participants described new
20472900, 2018, 5, Downloaded from https://wchh.onlinelibrary.wiley.com/doi/10.1002/pdi.2187 by Ministry Of Health, Wiley Online Library on [09/03/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
emotional challenges such as the
permanent attachment to the pump.
Psychological support strategies are
important in overcoming these
vulnerabilities and challenges.
This study employed the Optimal
Health Wheel as a novel framework
of qualitative data analysis. It was
chosen for its holistic approach to
health and translatability to use in
self-management programmes, as
previously demonstrated, for other
chronic diseases.17,26–28 This study
provides additional evidence to the
findings of Ritholz et al.6 for the role
of self-management programmes in
diabetes. Such programmes can be
used as an opportunity to discuss
active approaches to self-manage-
ment and coping strategies to deal
with the psychosocial burden of
living with T1DM.
The implementation of self-man-
agement programmes and psycho-
logical support in the management
of T1DM is still poorly established,
particularly compared to T2DM.
This is in part due to the large num-
ber of interventions available, the
difficulty in establishing which com-
ponents of the varied interventions
might indeed be beneficial, and what
outcomes capture both physical and
psychosocial measures. There exists
some promising evidence for these
interventions.29 However, a review by
Harkness et al.30 failed to identify any
specific intervention that showed
improvement across both physical
and mental health. Therefore, the
development of such interventions
remains a challenge, despite the
need for a psychosocial approach to
the care of people living with T1DM.
Some isolated studies have shown
promising results and these should
be encouraged.31
Limitations
Three different interviewers facili-
tated the focus groups and interviews
in this study. In order to ensure con-
sistency across interviewers, similar
training was provided and the same
question schedule was used for all
focus groups and interviews. Despite
this, there may be differences in
interview style. Further­ more, the
semi-structured interview schedule
has the potential to limit the ability
to gain a true and thorough appreci-
ation of participants’ experiences.

While the gender ratio of partic-
ipants was similar to that of all CSII
therapy users attending the targeted
clinic, there appeared to be bias
towards the 30–40-year-old age
group. This may have changed the
focus of the sub-themes. For exam-
ple, childbearing was a recurrent
topic mentioned in this study.
Future directions
This study has highlighted a need
for psychological support services
as part of routine care for those
living with T1DM and using an
insulin pump. Future research
should be focused on building
additional evidence for these ser-
vices including self-management
programmes. Furthermore, the
findings of this study can be used to
tailor the Optimal Health Program
for use in people living with T1DM.
The themes of such programmes
should be a core part of continued
education for HCPs working in
diabetes care.
This study outlines a number
of key pump design suggestions
and improvements, which should
be used to inform pump manufac-
turers on future technological
developments in order to improve
user-friendliness. More qualitative
studies exploring the practicalities
of pump use, such as that under-
taken by O’Kane et al.,24 should
be encouraged.
The psychosocial impact of
newer technologies in the treat-
ment of T1DM, including continu-
ous glucose monitors, should not
be forgotten. Therefore, further
qualitative studies, such as this one,
must be carried out to examine the
psychosocial repercussions. In par-
ticular, future studies should look
at differences between rural and
metropolitan experiences and how
PRACTICAL DIABETES VOL. 35 NO. 5 COPYRIGHT © 2018 JOHN WILEY & SONS
20472900, 2018, 5, Downloaded from https://wchh.onlinelibrary.wiley.com/doi/10.1002/pdi.2187 by Ministry Of Health, Wiley Online Library on [09/03/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
Original article
Living with type 1 diabetes and an insulin pump
Key points
● The Optimal Health Wheel encompasses six domains, namely Physical, Social, Emotional,
Occupational, Spiritual and Intellectual health. This holistic and novel framework for
qualitative data analysis has been successfully utilised in this study
● This study explores 19 key themes that provide an insight into those living with type 1
diabetes and an insulin pump. These themes are therapeutic relationships, personal
relationships, communal relationships, society, mental burden, emotional–physical
interplay, self-esteem and personality, fear of complications, diabetes education,
diabetes insight, self-management, pump therapy, additional health challenges, dietary
flexibility, lifestyle freedom, new restrictions, sense of self, perspectives and mindset,
and future outlook
● All health care professionals involved in the care of people living with type 1 diabetes and
an insulin pump must be familiar with these themes in order to optimise patients’ health.
Further research is needed to consider the impact of newer technologies and the
development of psychological support programmes
perceptions of CSII therapy change glycaemic control and general well-
with time. There should also be being of people living with T1DM.
efforts made to explore why people
discontinue CSII therapy, which is a Acknowledgements
cohort not captured in this study. This study would not have been
possible without the contributions
Conclusions of all the participants involved.
This study has successfully utilised Thank you to Dr Gaye Moore for
the Optimal Health Wheel as a your assistance with the framework
framework for qualitative data anal- approach to qualitative data analysis.
ysis. We identified 19 key themes, Thank you to Associate Professor
which provide insight into the lives Chantal Ski and Dr Bridget Hamilton
of people living with T1DM and an for your advice with the study design.
insulin pump. These themes are Thank you to the Endocrinology
consistent with, and add to, the lim- Department at St Vincent’s Hospital,
ited research in this field.11 These Melbourne, for your support and
concepts should be at the forefront advice with undertaking this study.
for all HCPs who care for pump Also thank you to Dr Lauren
users in order to provide a holistic Sanders and Ms Helen Wilding.
approach to their care and optimise
their management. People living Declaration of interests
with T1DM should also be informed There are no relevant conflicts of
about these themes when consider- interest to disclose. This research did
ing CSII therapy, as the decision not receive any specific grant from
involves balancing quality of life funding agencies in the public, com-
concerns with improved glycaemic mercial, or not-for-profit sectors.
control. Furthermore, our findings
are invaluable in the development References
of psychological support pro- References are available online at
grammes in order to improve both www.practicaldiabetes.com.
177

Original article
Living with type 1 diabetes and an insulin pump
References
1. Speight J, et al., on behalf of the Diabetes MILES –
Australia reference group. Diabetes MILES –
Australia 2011 Survey Report. Melbourne: Diabetes
Australia – Vic; 2011.
2. Barnard KD, et al. The prevalence of co-morbid
depression in adults with type 1 diabetes: systematic
literature review. Diabet Med 2006;23(4):445–8.
3. Subasinghe SS, et al. A review of the prevalence and
associations of depression and anxiety in type 1
diabetes mellitus. J Diabetes Metab Disord 2015;
2(1):007.
4. van Bastelaar KMP, et al. Diabetes-specific emo-
tional distress mediates the association between
depressive symptoms and glycaemic control in
type 1 and type 2 diabetes. Diabet Med 2010;27(7):
798–803.
5. Deakin T, et al. Group based training for self-man-
agement strategies in people with type 2 diabetes
mellitus. Cochrane Database Syst Rev 2005;(2):
CD003417.
6. Ritholz MD, et al. Perceptions of psychosocial factors
and the insulin pump. Diabetes Care 2007;30(3):
549–54.
7. Barnard KD, et al. Systematic literature review: qual-
ity of life associated with insulin pump use in type 1
diabetes. Diabet Med 2007;24(6):607–17.
8. Misso ML. Continuous subcutaneous insulin infu-
sion (CSII) versus multiple insulin injections for type
1 diabetes mellitus. Cochrane Database Syst Rev
2010;(1):CD005103.
9. Shaban C, et al. Diabetes distress and fear of hypo-
glycaemia: what are the psychological benefits of
insulin pump therapy? Pract Diabetes 2017;34(8):
273–6.
10. Ritholz MD, et al. Digging deeper: The role of quali-
tative research in behavioral diabetes. Curr Diabetes
Rep 2011;11(6):494–502.
11. Grose DN, et al. Type 1 diabetes and an insulin
pump: an iterative review of qualitative literature.
Pract Diabetes 2017;34(8):281–7c.
12. Garmo A, et al. Treatment effects and satisfaction
in diabetic patients changing from multiple daily
insulin injections to CSII. Pract Diabetes Int 2004;
21(1):7–12.
13. Barnard KD, Skinner TC. Qualitative study into
quality of life issues surrounding insulin pump use
in type 1 diabetes. Pract Diabetes Int 2007;24(3):
143–8.
14. Saarinen T, et al. Insulin pump therapy is perceived
as liberating, but to many it can imply a sense of the
diabetes made visible. Eur Diabetes Nurs 2008;11(2):
38–42.
15. Todres L, et al. Continuous subcutaneous insulin
infusion in type 1 diabetes: patient experiences of
‘living with a machine’. Diabet Med 2010;27(10):
1201–4.
16. Garmo A, et al. ‘The pump was a saviour for me‘:
Patients’ experiences of insulin pump therapy.
Diabet Med 2013;30(6):717–23.
17. Gilbert MM, et al. Controlled clinical trial of a
self-management program for people with mental
illness in an adult mental health service – the
Optimal Health Program (OHP). Australian Health
Rev 2012;36(1):1–7.
18. Smith J, Firth J. Qualitative data analysis: the frame-
work approach. Nurse Res 2011;18(2):52–62.
19. Pickup J, Keen H. Continuous subcutaneous insulin
infusion at 25 years: Evidence base for the expand-
ing use of insulin pump therapy in type 1 diabetes.
Diabetes Care 2002;25(3):593–8.
20. Everett J, et al. Barriers to improving glycaemic con-
trol in CSII. J Diabetes Nurs 2010;14(5):176–81.
21. Tullman AJ. A phenomenological study of the psy-
177a PRACTICAL DIABETES VOL. 35 NO. 5 COPYRIGHT © 2018 JOHN WILEY & SONS
20472900, 2018, 5, Downloaded from https://wchh.onlinelibrary.wiley.com/doi/10.1002/pdi.2187 by Ministry Of Health, Wiley Online Library on [09/03/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
Appendix 1. Interview schedule
1. Tell me about your experience of living with type 1 diabetes and using an insulin pump.
2. What was your experience in making the transition from using injections to the pump?
3. Tell me about how your day-to-day lifestyle changed using the insulin pump compared to
daily injections.
4. What is your future outlook for your health and overall wellbeing?
5. Tell me about your experience where your management has gone off track.
6. What have been some of the hardest things to cope with so far whilst you’ve been living
with diabetes?
7. What have been some helpful supports that you’ve had throughout different stages of
your diabetes?
8. Is there anything else you’d like to add?
Appendix 2. Definitions of the 6 domains of the Optimal Health Wheel32
• Social. This involves the relationships with family, friends and other people in the wider
community that we interact with from day to day. It considers not only the quantity of
relationships but also the quality of our interactions with others. This area considers our
level of comfort and ability to assess resources in the community.
• Emotional. This area recognises awareness and acceptance of our feelings. It involves
the capacity to manage our feelings and related behaviours including the ability to
manage stress.
• Intellectual. This area relates to our ability to think, concentrate, learn and solve
problems. It recognises the need for mental stimulation and challenge in daily life to learn
and develop our understanding of ourselves and the world we live in.
• Occupational. This area not only includes work (paid or voluntary) but involves all of the
things that we do to occupy our time including looking after ourselves, family and home
and participating in leisure activities/hobbies or study. It includes choosing activities that
are consistent with our values, interests and goals and achieving a balance between these
activities that maintain our health.
• Spiritual. This area considers the meaning and purpose of our lives and how consistent
our actions are with our beliefs and values. It may or may not include identification with a
common belief system or faith.
• Physical. This involves taking an active role in maintaining our physical health and
choosing behaviours that promote health. It involves being aware of what physical illness
we are vulnerable to and looking out for early warning signs that indicate we might
become unwell.
chosocial effects of insulin pump therapy on the Dialysis Optimal Health Program (DOHP) ran-
body image and self-esteem of female, adolescent, domised controlled trial. Trials 2016;17(1):447.
insulin dependent diabetics [PsyD]. Ann Arbor: The 28. Brasier C, et al. The Stroke and Carer Optimal Health
Chicago School of Professional Psychology, 2013. Program (SCOHP) to enhance psychosocial health:
22. Barnard K, et al. Impact of type 1 diabetes technol- study protocol for a randomized controlled trial.
ogy on family members/significant others of people Trials 2016;17(1):446.
with diabetes. J Diabetes Sci Technol 2016;10(4): 29. Steed L, et al. A systematic review of psychosocial
824–30. outcomes following education, self-management
23. Browne JL, et al. ‘I’m not a druggie, I’m just a and psychological interventions in diabetes mellitus.
diabetic’: a qualitative study of stigma from the Patient Educ Couns 2003;51(1):5–15.
perspective of adults with type 1 diabetes. BMJ 30. Harkness E, et al. Identifying psychosocial interven-
Open 2014;4:e005625. tions that improve both physical and mental health
24. O’Kane AA, et al. Concealing or revealing mobile in patients with diabetes: a systematic review and
medical devices? Designing for onstage and meta-analysis. Diabetes Care 2010;33(4):926–30.
offstage presentation. Seoul, Republic of Korea: 31. Ismail K, et al. A randomised controlled trial of cog-
Proceedings of the 33rd Annual ACM Conference on nitive behaviour therapy and motivational inter-
Human Factors in Computing Systems, 2015. viewing for people with type 1 diabetes mellitus
25. Hood DG, Duke G. The nature and meaning of insulin with persistent sub-optimal glycaemic control: A
pump use in emerging adults with type 1 diabetes. Diabetes and Psychological Therapies (ADaPT)
Diabetes Spectr 2015;28(2):75–81. study. Health Technol Assess 2010;14(22):1–101,
26. Ski CF, et al. Trialling of an optimal health iii–iv.
programme (OHP) across chronic disease. Trials 32. Castle D, et al. Optimal Health Program: My
2016;17(1):445. Workbook, 3rd edn. Fitzroy: St Vincent’s Hospital,
27. Knowles SR, et al. Design and protocol for the Melbourne, 2015.