Can J Diabetes 45 (2021) 395e402

Contents lists available at ScienceDirect

Canadian Journal of Diabetes

journal homepage:
www.canadianjournalofdiabetes.com

Original Research

Insulin Pump Therapy Improves Quality of Life of Young Patients With

Type 1 Diabetes Enrolled in a Government-Funded Insulin Pump
Program: A Qualitative Study
Emily Haynes MPH a, *; Marissa Ley MA a; Pam Talbot MSc b; Margaret Dunbar MEd, PDt b;
Elizabeth Cummings MD a, c
a
Faculty of Medicine, Dalhousie University, Halifax, Nova Scotia, Canada
b
Diabetes Care Program of Nova Scotia, Nova Scotia Health Authority, Halifax, Nova Scotia, Canada
c
Department of Pediatrics, Dalhousie University/IWK Health Centre, Halifax, Nova Scotia, Canada

Key Messages

Parents, youth and young adults find insulin pumps improve quality of life by providing more control over the day-to-day social
impacts of diabetes.

Improvements in quality of life with diabetes are experienced differently in young people depending on stage of life.

Participants were happy with the government-funded program, but worry about having to stop using a pump for financial reasons
when they age out of the program.

a r t i c l e i n f o a b s t r a c t

Article history: Background: The Nova Scotia Insulin Pump Program (NSIPP) subsidizes the cost of insulin pump therapy for
Received 20 April 2020 young patients (25 years) with type 1 diabetes. The first NSIPP evaluation focused on clinical outcomes
Received in revised form
rather than quality of life. Existing research on insulin pumps and quality of life is mostly survey based, with
17 August 2020
Accepted 17 August 2020
limited first-voice experiences. In this qualitative study, we examined patient and parent perspectives on
how insulin pumps affect quality of life in the context of a government-funded program.
Methods: In this investigation, we used a phenomenological approach, guided by a conceptual model. In-
Keywords:
child depth semistructured telephone interviews (median, 37 minutes) were completed with NSIPP enrollees
continuous subcutaneous insulin infusion and/or their parents. Saturation was reached after 23 interviews. Verbatim transcripts were coded
qualitative research independently by 2 researchers. Coding discrepancies were discussed and resolved using concept
quality of life mapping to clarify relationships between codes and to identify main themes.
type 1 diabetes Results: There were 2 main themes: 1) NSIPP financial support was necessary for those without private
youth insurance and 2) control over life and diabetes with subthemes of social experiences and worry. Par-
ticipants expressed this theme differently depending on their stage of life. For example, some children
experienced shame and even hid their pump, whereas teens were more self-confident with the
discreetness of pumps and young adults wore their pump with pride.
Conclusions: Insulin pump therapy, subsidized through the NSIPP, led to improved quality of life, which
was experienced differently depending on stage of life.
Ó 2020 Canadian Diabetes Association.

r é s u m é
Mots clés:
enfant
Introduction : Le Programme de pompe à insuline de la Nouvelle-Écosse (NSIPP, de l’anglais Nova Scotia
perfusion continue d’insuline par voie sous-cutanée
recherche qualitative Insulin Pump Program) subventionne les coûts de l’insulinothérapie par pompe des jeunes patients ( 25
qualité de vie ans) atteints du diabète de type 1. La première évaluation du NSIPP portait plutôt sur les résultats
diabète de type 1 cliniques que sur la qualité de vie. La recherche actuelle sur les pompes à insuline et la qualité de vie
jeunes repose principalement sur des enquêtes qui ne portent que peu sur les premières expériences des

* Address for correspondence: Elizabeth Cummings MD, IWK Health Centre, PO Box 9700, 5850-5980 University Avenue, Halifax, Nova Scotia B3K 6R8, Canada.
E-mail address: elizabeth.cummings@dal.ca

1499-2671/Ó 2020 Canadian Diabetes Association.

The Canadian Diabetes Association is the registered owner of the name Diabetes Canada.
https://doi.org/10.1016/j.jcjd.2020.08.101
396 E. Haynes et al. / Can J Diabetes 45 (2021) 395e402

patients. Dans la présente étude qualitative, nous avons examiné le point de vue des patients et des
parents sur la façon dont les pompes à insuline ont des répercussions sur la qualité de vie dans le
contexte d’un programme financé par l’État.
Méthodes : Dans cette enquête, nous avons utilisé une approche phénoménologique inspirée d’un
modèle conceptuel. Nous avons réalisé des entretiens téléphoniques semi-structurés en profondeur
(médiane, 37 minutes) avec les participants au NSIPP et/ou leurs parents. Nous avons atteint la
saturation après 23 entretiens. Deux chercheurs indépendants ont fait la codification des transcrip-
tions textuelles. Nous avons examiné les divergences de la codification et les avons résolues à l’aide
de la cartographie conceptuelle pour clarifier les relations entre les codes et pour recenser les
principaux thèmes.
Résultats : Les 2 principaux thèmes étaient les suivants : 1) l’aide financière du NSIPP était nécessaire
pour ceux qui n’avaient pas d’assurance privée; 2) la maîtrise sur la vie et le diabète, et des sous-thèmes
sur les expériences sociales et les inquiétudes. Les participants exprimaient ce thème différemment selon
l’étape de leur vie. Par exemple, quelques enfants éprouvaient de la honte et cachaient même leur
pompe, alors que les adolescents avaient plus confiance en eux en raison de la discrétion des pompes, et
les jeunes adultes portaient fièrement leur pompe.
Conclusions : L’insulinothérapie par pompe, financée par le NSIPP, a mené à une meilleure qualité de vie.
Toutefois, les expériences différaient selon les étapes de la vie.
Ó 2020 Canadian Diabetes Association.

Introduction
Choice of insulin therapy for type 1 diabetes depends on per-
sonal, social and medical factors (1). Reviews comparing insulin
pump therapy (i.e. continuous subcutaneous insulin infusion) with
multiple daily injection therapy in adult and pediatric populations
showed no or marginal improvement in metabolic control of type 1
diabetes (2e6). Qualitative and survey-based studies showed that
insulin pump therapy is associated with improved quality of life for
both patients and their parents (7). However, most of the evidence
for improved quality of life related to insulin pumps comes from
survey studies that use validated diabetes-specific or generic
quality-of-life questionnaires (8e20). Fewer studies employ inter-
view methods to investigate this relationship (21e23).
First-voice patient experiences can help shape measures and
research questions used for future quantitative studies and provide
practical, context-specific feedback for clinicians and those evalu-
ating government-funded pump programs. Furthermore, including
parent perspectives is important because parents play a significant
role in managing their child’s diabetes, are themselves affected by
their child’s disease, and may have a more mature and holistic
understanding of the disease’s impact on their child and family.
Only 1 study included interviews with children with type 1 dia-
betes and their parents, and no major differences in perspective
were reported (23).
To our knowledge, no studies have examined the relationship
between insulin pump therapy and quality of life in the context of
financial subsidies provided by a government-funded program.
Government funding for insulin pumps increases access, especially
for those who are of lower socioeconomic status, and thus, may have
difficulty affording a pump and who may have been omitted from
earlier studies. Of the 3 available qualitative studies, only 1 reported
its participants’ varying socioeconomic backgrounds (22). In Nova
Scotia, Canada, the government-funded Nova Scotia Insulin Pump
Program (NSIPP) was established in 2013 to subsidize costs of insulin
pumps and supplies for young patients (i.e. those 25 years old)
based on financial need. NSIPP is one of many similar programs
across Canada. Enrollees who meet specific eligibility criteria are
provided with structured education and standardized follow up
through NSIPP-approved diabetes centres by specialty diabetes
teams (see Supplementary Interview Guide online). For the 2020
coverage year, half of the enrollees receive 100% coverage from the
NSIPP for their insulin pump and pump supplies (personal
communication with NSIPP coordinator). The others receive a mix of
NSIPP coverage, insurance coverage and/or pay a copay. In this study,
we addressed gaps in the literature by using semistructured tele-
phone interviews to understand the lived experiences of young
insulin pump users with type 1 diabetes and their parents in the
context of a government-funded pump program. We sought pri-
marily to understand how insulin pump therapy among those
enrolled in the NSIPP may have affected their and their family’s
quality of life and the role that NSIPP financial support, processes and
structures may have played in influencing the lived experiences of
enrollees and their families. In addition, we aimed to inform pro-
gram improvements and/or expansion.
Methods
Study design
This qualitative study used a phenomenological approach to
understand the experiences of NSIPP enrollees and/or their parents.
This approach was chosen because “to understand the ‘essence’ of
phenomena, one (has) to understand how the ‘life world’ (is)
directly experienced” (21, p 14). Children and/or their parents and
young adults enrolled in the NSIPP were asked, “How does the
insulin pump influence their quality of life?” Secondary objectives
included understanding participants’ feelings about their future
with the pump, and how the NSIPP’s processes had an impact on
their quality of life, if at all.
Ethics approval was obtained from the IWK Health Centre
Research Ethics Board (#102463).
NSIPP
Depending on income and family size, the NSIPP pays for all or
part of the cost of an insulin pump and/or pump supplies but not
other diabetes needs (24). The NSIPP is the payer of last resort.
Some enrollees have part or all of their costs covered by private
health insurance or may pay out of pocket. NSIPP enrollees must
receive structured education, assessment and follow up at NSIPP-
approved tertiary (staffed by endocrinologists) or secondary (with
access to pediatricians/internists) level diabetes centres. To enroll,
patients must meet certain medical eligibility criteria (see
Supplementary Interview Guide).
 E. Haynes et al. / Can J Diabetes 45 (2021) 395e402 397

Cohort selection

The NSIPP coordinator produced a deidentified list of 95 current

NSIPP enrollees (up to April 30, 2018), including limited demo-
graphic information (age, sex, health management zone and date of
first enrolment). Individuals who enrolled for the first time during
March and April 2018 (n¼7) were excluded from the study, as they
would have little experience to contribute (<6 months in program
at time of interview). The investigators purposively selected a
cohort of potential participants from the remaining list (n¼88),
ensuring representation from each age group, sex and health
management zone. The final cohort of potential participants
included 81 enrollees (n¼7 were excluded due to over-
representation in the groups 18 to 25 years of age). Purposive
selection of participants endeavoured to allow representation of all
demographic variables in the cohort of potential participants. It is
Social
an accepted method used in qualitative research to elicit suspected experiences
differences in viewpoints and lived experiences (25). The NSIPP
coordinator reidentified the list, called potential participants to
obtain consent to be contacted by the investigator, and sent the Figure 1. Conceptual model demonstrating the impact of programmatic support to
insulin pump access and quality of life. The model shows that insulin pumps are
study information package to potential participants who agreed to
associated with increased feelings of control over life and diabetes (bottom arrow).
be contacted by the investigator. The investigator called those who NSIPP was necessary for some to access an insulin pump (left downward arrow), and
agreed to be contacted, explained the study, sought consent for was financially helpful (middle downward arrow) for those who would have been able
participation and completed the interviews. If there was no answer to access a pump without NSIPP, either through private insurance or out of pocket.
when the NSIPP coordinator or investigator called, they left a NSIPP, Nova Scotia Insulin Pump Program.

message and callback number; after 4 attempts, the individual was

Data analysis
not contacted again. Interviews with new participants proceeded
until saturation was reached. Saturation is used in qualitative
As interviews progressed, concept maps were drawn, connect-
research to determine when the study sample size is sufficient (25).
ing key emerging ideas. Researchers (E.H., E.C., M.L.) met periodi-
To assess for saturation in final interviews, the interviewer probed
cally to discuss emerging codes and evolving themes, modify the
deeper and questioned about alternative viewpoints. Saturation
interview guide and update the conceptual model. Interview
was reached and interviews ended when this probing yielded no
transcripts were uploaded to NVivo version 12 (QSR International)
new information.
analysis software for thematic coding by E.H. and M.L., indepen-
dently. M.L. has a Master’s degree in health promotion, and expe-
Telephone interviews
rience collecting and analyzing qualitative data. Initially deductive

Data were collected from June 2018 to August 2018. The inter-
view guide (Supplementary Material) was based on a conceptual NSIPP enrollees for 2018 coverage
year (to April 30, 2018)
model (Figure 1) and changed as new codes emerged and larger N=95
themes evolved. Twenty-three interviews were completed, each
Excluded (N=14: 7 recent enrollees and
lasting from 5.65 to 70.55 minutes (median, 37 minutes; inter- 7 from over-represented age group)
quartile range, 8.45 minutes). Depending on the age of the NSIPP
enrollee (4 to 25 years), either the enrollee (18 to 25 years), their Eligible NSIPP enrollees selected
parent (up to 12 years) or both (13 to 17 years old) were invited to for contact by NSIPP coordinator
be interviewed (Figure 2). In the 13- to 17-year age group, 1 teen N=81

was unavailable and 2 had parents who did not consent to their 4 messages left by NSIPP coordinator
participation. Three parent‒youth dyads were interviewed indi- but calls not returned (N=37)

vidually in this age group. Two were interviewed sequentially

Reached by NSIPP
(parent then child) and 1 youth’s interview occurred on a separate
coordinator
day after their parent’s interview. Each participant was interviewed N=44
only once. All interviews were completed by E.H., a medical student
Declined to be contacted by study
with a master’s degree in public health, who has experience con- investigator (N=5)
ducting qualitative interviews in her previous role as a research
associate. Participants were told that the interviewer was a medical Agreed to be contacted by
student. A minority of participants asked the interviewer about her study investigator
N=39
motivations for conducting the study; she disclosed that she had
interest in the subject and that completing a research project was a 4 messages left by study investigator
but calls not returned (N=19)
requirement of her degree. Interviews were initiated by E.H. in a
private setting, audio recorded, anonymized and transcribed
verbatim. Participants were not given the questions before the Completed interview
N=20 enrollees (23 interviews)
interview. The interview guide was not pilot tested; however, it was Enrollees 0-12 yr: 7 parents interviewed
developed with input from both a physician who provides care to Enrollees 13-17 yr: 4 parents interviewed
3 parent/enrollee dyads interviewed individually
NSIPP patients and from administrators of NSIPP. Interview ques- Enrollees 18-25 yr: 6 enrollees interviewed
tions and prompts were asked in a neutral or nonleading way.
Prompts represented prominent themes from the literature on Figure 2. Interviewees based on Nova Scotia Insulin Pump Program patient age. NSIPP,
insulin pumps and quality of life. Nova Scotia Insulin Pump Program; yr, years.
398 E. Haynes et al. / Can J Diabetes 45 (2021) 395e402

codes from the original conceptual model and interview guide were Table 1
used. As coding proceeded, inductive codes were added as they Demographic variables of interviewees

emerged from the data. After this process, the 2 coders met to NSIPP enrollee characteristic n (%) NSIPP
discuss their findings. Discrepancies were resolved using the enrollees
concept mapping technique to organize and connect themes. E.C., a 2013‒14 to
2015‒16
diabetes care physician, guided the discussions and posed ques- (N¼148 *)
tions, but did not code in order to ensure that the results reflected
Year of first enrolment to NSIPP
participant voices rather than her expectations. Together, they
2013y‒2015 7
agreed on a final set of codes and organized codes into larger (35%)
themes. The final set of themes became constructs in the concep- 2016‒2018 13
tual model. Although participants were not given an opportunity to (65%)
Age, years
review or modify their transcripts, the main findings were sent out
12 7
by e-mail with an invitation to an online discussion of the findings (35%)
and to allow participant feedback. No participants chose to attend 13‒17 7
this session, and no feedback was received by e-mail. (35%)
18‒25 6
(30%)
Conceptual model
18 15 72%
(75%)
The conceptual model demonstrating the impact of program- 19‒25 5 28%
matic support to insulin pump access and quality of life (Figure 1) is (25%)
a visual representation of both the study’s process and findings. The Female sex 11 51%
(55%)
initial version of the model was informed by common themes New pump user upon enrolment to NSIPP 13 43%
found in the literature and by a questionnaire distributed by the (65%)
NSIPP (April 2015 to July 2017). This questionnaire was based on Lived within health zone with tertiary centre (i.e. 8 47%
validated diabetes-specific quality-of-life questionnaires but Central Zone) (40%)
Live near tertiary care centre (within a 30-minute drive) 6 NA
adapted slightly to suit the age distribution of NSIPP enrollees
(30%)
(26,27). The early model clarified the boundaries of the study’s Had some private insurance support for a pump with or 10 NA
investigation, informed the development of the interview guide without supplies z (50%)
and provided the initial deductive codes during data analysis. The NA, not available; NSIPP, Nova Scotia Insulin Pump Program.
model evolved and was finalized through the data analysis process * Number represents all NSIPP enrollees, data from NSIPP evaluation report (39).
y
to visually depict the study’s main results (see Figure 1). Partial year (program launched September 2013).
z
Further breakdown cannot be provided due to small cell sizes.
Results
their insulin pump less from others. 4) Older teens were focused on
the transition to adulthood and the next stage of life (work and/or
Of the 81 NSIPP enrollees (enrolled between July 1, 2017 and
postsecondary school). They were independent from their parents,
April 30, 2018) selected as potential participants, 39 consented to
for the most part, including in their diabetes care. The insulin pump
be contacted by the study investigator and 20 completed inter-
impacted their quality of life by helping them to function in these
views singly or as parent-enrollee dyads (Figure 2). These individ-
new roles and settings more seamlessly. This age group began to
uals were evenly distributed across sex, age groups and health
speak more pridefully of their pump and did not worry very much
management zones (Table 1). Overall, characteristics of study
about aging out of NSIPP. 5) Young adults had made the transition
participants were similar to the general population of NSIPP
to adulthood and were functioning in their new roles. This group
enrollees (21).
wore their pumps with pride and began to worry more about aging
There were 2 main themes: 1) NSIPP financial support was
out of NSIPP.
necessary for many of those without private insurance and 2)
control over life and diabetes with subthemes of social experiences
and worry. Although the initial cohort selection grouped partici- Main theme 1: NSIPP support
pants in 3 age groups (ages 12, 13 to 17, and 18 to 25 years), 5
distinct “stages of life” emerged, defined by experiences that are The NSIPP played a facilitative role in the relationship between
common to people in that stage of development. Specific age cut- insulin pump use and quality of life. The NSIPP’s financial support to
offs were not assigned, as often level of development or maturity enrollees and their families was necessary for those who did not
does not correspond to specific ages. Participants expressed the have private insurance to help pay for an insulin pump and/or
second main theme, control over life and diabetes, differently supplies. These participants expressed gratitude to NSIPP for
depending on their stage of life. providing access to pump therapy and its associated improvement
The 5 stages of life were as follows: 1) Young children relied in quality of life. Without NSIPP, some said that they would not have
completely on their parents for daily activities, including diabetes been able to afford a pump. Others said that they would have
care. Quality of life in this group manifested mostly through worked to save their money for a pump, and that the financial
allowing the child to be able to play freely with peers and the ability sacrifice would be worthwhile. Those who had private insurance
to better manage common childhood illnesses. 2) Preteens were were still thankful to the NSIPP and recognized the importance it
beginning to take more control and gain more independence in probably had for those without private insurance who would have
many aspects of their lives, including diabetes care. Pumps difficulty paying for the pump (Table 2, Quote 1).
impacted quality of life in this group by allowing them more Overall, participants were pleased with the NSIPP as a program.
freedom to spend time with friends without parents present. This When asked specifically about the NSIPP improving quality of life,
group tended toward hiding their insulin pump from others. participants often went straight to the financial impact that NSIPP
3) Younger teens were used to being out on their own and man- had for them or the quality of their diabetes care. With regard to the
aging their diabetes, but were not fully independent, including for NSIPP’s delivery, suggestions for improvement were minor and
their diabetes management. This group was also beginning to hide related to logistics with enrolment and administration. Some were
 E. Haynes et al. / Can J Diabetes 45 (2021) 395e402 399

Table 2
Typical quotes representing main themes

Construct Quote(s)

NSIPP support 1. “[Without the NSIPP] I think we’d still be on injections, and we’d still be on . the blood sugar roller coaster. I mean, you know,
the avenues of paying for it which were impossible, I don’t think she would have a pump.” (Interview 10, parent of patient, age
12)
2. “To pay for [a CGM] out of pocket, I think it would be around $6,000 or $7,000 a year, so that’s out of the question. But if it ever
was covered, that would be amazing just to be able to keep track of the sugars better, and have that alarm.” (Interview 2, parent
of patient, age 12)
3. “Being on the pump has been such a positive experience and having a program like the Nova Scotia Insulin Pump Program is
such a great thing. It’s such an amazing experience to be able to actually afford to be on the pump, and be able to do these kinds
of things because it does, it really increases the quality of life. It has made my life so much easier, so much more stress free. So,
it’s just been amazing.” (Interview 13, patient, age 18‒25)
Control over life and diabetes—social 4. “I think just being able to spontaneously give yourself a bolus of insulin when you are at a birthday party and you have a piece of
experiences cake. You know, when you’re young those sorts of things pop up. You know, not keeping you on such a rigid schedule. We’re a
really busy family. We play a lot of sports; the kids are traveling. Just nice to have that ability to not necessarily be on that
routine of breakfast, lunch, dinner, insulin injections, yeah.” (Interview 4, parent of patient, age 13‒17)
5. “Well, I was expecting [the pump] to be a lot easier because I wouldn’t have to lug around needles and insulin and all that. It’d
just be something I could just put on my hip and go.” (Interview 18, patient, age 13‒17)
6. “You’d get up and then you’re up for 2 hours or something because you’re trying to get a blood sugar up, or trying to get a blood
sugar down, or we’ve got ketones, and that was a regular thing, that we were up in the night. We were taking turns, but both my
husband and I were really sleep deprived because you know, between 2 and 4 when you should be having sleep, you’re up just
trying to tame the monster.” (Interview 22, parent of patient, age 12)
7. “What if someone didn’t understand that I had diabetes? What if someone didn’t know what I was doing? . It made me feel
like this [giving injections] wasn’t something that was appropriate to be doing in a public place. (Interview 13, patient, age
18‒25)
8. “[The pump] is great. I really enjoy it. Not until recently did I fully embrace it. I used to hide it a lot, just because I was
embarrassed of it, and I didn’t like when people would ask me questions. I’d put it in my bra or I’d tuck it away in my pocket. But
since getting this new pump and starting the NSIPP, I’ve really embraced it. So, I actually really enjoy wearing it on my hip now,
and telling people about it. (Interview 9, age 18‒25)
Control over life and diabetes— 9. “There’s always worry, especially when they’re not in your care and they’re gone with someone else, or they’re gone on their
worries own. So, with having the insulin injections there was always that worry of, if she does too much activity, her sugar’s going to
wear off and the insulin’s going to wear off, and that she’s going to drop . But now that she’s on the insulin pump, we have
[only a] little bit of worry.” (Interview 1, parent of patient, age 12)
10. “[The pump has given] more independence for [son], more opportunities for him to really take charge of his diabetes, too, and
be more confident in administering himself insulin, and counting carbs because he does that, and enters them into his pump
controller. And, for me, it’s peace of mind that I can let him go to school for a day, and even if . he’s not in the blood sugar range,
he has the confidence to make the adjustments . It’s great the independence that this pump has given.” (Interview 3, parent of
patient, age 12)
11. “[When] I was in high school [my] A1Cs were pretty high, and I was just not really taking care of myself the best I could. I tried
working on it more once high school got to an end because I knew that I had to take care of myself. And I was switching over .
to the adult hospital, so I guess I started the pump because I needed a change, and needed something to motivate me to take
better care of myself.” (Interview 16, patient, age 18‒25)
12. “There’s no way I would have been able to afford a pump without the insulin pump program. I would have had to go back to
injections, which would have been really hard . [the NSIPP’s] ability to fund my pump was an enormous relief off of my stress
of having to go back to injections.” (Interview 23, patient, age 18‒25)
13. “When they come out with a true closed loop system, if they can house something like that in Canada and have it covered, I
think it should be covered because that would, to [daughter] it would be almost as good as a cure.” (Interview 8, parent of
patient, age 12)

frustrated with the 1-year waiting period between diabetes diag-
nosis and qualifying for an NSIPP-supported pump. Others thought
the annual renewal process was redundant. Some young adults
noted that the requirement to be seen at enrolment and at least
once a year by a diabetes specialist physician in Nova Scotia was
challenging for those attending school in another town or province.
Finally, some thought the NSIPP could increase awareness of the
program and who may benefit from participation. Interactions with
the NSIPP coordinator, physicians and diabetes educators (nurses
and dietitians) at the NSIPP-approved diabetes centres were all
reported to be positive. With regard to coverage, participants
commonly expressed the wish that the NSIPP would expand by
raising or removing the age limit of 25 years, branching out to
cover continuous glucose monitors and reducing copayments.
It caused participants distress to imagine “aging out” of the
program at age 26 and being forced to return to injections (Table 2,
Quotes 2 and 3).
Main theme 2: Control over life and diabetes
Key features of insulin pumps that affected patients’ and par-
ents’ feelings of control over life and diabetes include: the real-time
nature of fast-acting insulin and the ability to change basal rates,
the improved precision of insulin doses and the pump’s convenient
calculators that use insulin-to-carbohydrate ratios to calculate and
deliver boluses.
Subtheme 2a: Social experiences: The pump’s impact on social
experiences included improvements in daily functioning and
helping pumpers to feel more “normal.” It was clear that the insulin
pump made day-to-day activities easier for users. Participants felt
that the pump allowed them to live their lives as they wanted to,
rather than scheduling life around diabetes care. Participants
talked about freedom in sleep schedules, meals (when and how
much to eat) and physical activities. Young adults felt better
equipped to function at postsecondary school and work. With
injections using long-acting insulin, it was more difficult to do
unplanned activities because, “once it’s in, it’s in,” and you cannot
take it back. The pump allowed participants to have more
spontaneity in their lives (Table 2, Quote 4).
The pump was also considered easier and more convenient than
injections. Pressing buttons to bolus was quicker than preparing
needles, drawing up insulin and injecting. For parents of young
children, this was important because their child could play with
less interruption. For preteens and teens, the ease of pressing a
button and the fact that it went with them everywhere meant they
400 E. Haynes et al. / Can J Diabetes 45 (2021) 395e402
were given more freedom to go to friends’ homes, and other
caregivers (like grandparents) felt more comfortable watching
them. Older teens and young adults found the time and effort
required for injections to be a hassle. Many participants talked
about the inconvenience of carrying injection supplies everywhere.
Comparatively, there were fewer things to carry with them on the
pump. The pump was thought to remove some of the mental
burdens of diabetes and injections, such as planning daily sched-
ules around long- and short-acting insulin injections and action,
calculating insulin-to-carbohydrate ratios mentally, and consid-
ering how much long-acting insulin is on board when spontane-
ously deciding whether to eat or be active (Table 2, Quote 5).
There were a few improvements to day-to-day functioning
specific to parents of younger children. They described how the
pump helped with their quality of life and peace of mind in man-
aging their young child’s diabetes. Soon after diagnosis, these
children sometimes needed insulin doses that were less than the
smallest measurable unit on syringes. Thus, parents struggled to
manage their child’s diabetes using injections, especially overnight.
In addition, they found that the pump was an effective tool to
manage fluctuating blood sugars during illness because of the
flexibility in insulin delivery (Table 2, Quote 6).
Across age groups, having a pump was reported to help the user
to feel more “normal.” Participants talked about the inconvenience,
shame or annoyance of doing an insulin injection in public. When
friends asked questions or watched them inject, it was distracting
and made them feel like a spectacle. In a more public setting,
participants worried others may associate their syringes with
injection drug use. To avoid public attention, some chose to find a
private place to inject. However, this approach was inconvenient
and evoked feelings of shame. The pump helped with all of these
issues because it was quicker and more discreet (Table 2, Quote 7).
Although participants from all age groups agreed that the pump
helped them or their child to feel more “normal,” they described
these feelings differently. Parents of young children felt uneasy and
“could not imagine” their child having to inject in public one day.
They told stories of their child even wanting to hide their pump.
Young teens and their parents told stories of how they/their child
was uncomfortable injecting in public and how their self-
confidence improved once they began pumping. Narratives shif-
ted among the older teens and young adults. They remembered
injecting in public and how it made them feel when they were
younger, but many had gained a new perspective. They were more
comfortable with the necessity of injecting in public but were still
grateful that the pump had removed that burden. Some young and
older teens, and many young adults had grown into a sense of pride
in their identity as a person with diabetes and wore their pump
with pride. As a result of visibly wearing their pump, many engaged
in education and advocacy efforts when questioned about their
pump (Table 2, Quote 8).
Subtheme 2b: Worry: The pump allayed existing worries but
introduced new ones related to participants’ control of their health
and future. Many parents, teens and young adults discussed the
worry of hypoglycemia. They felt that the pump helped them to be
proactive to prevent hypoglycemia and react quickly to changing
blood sugars. Parents worried about their child administering the
wrong dose of insulin when on their own, or that a teenager may
choose not to bolus or respond to alerts from the pump. Despite
these worries, most parents reported that they would have
been more concerned if their child was using injections (Table 2,
Quote 9).
As children grew into preteens, many parents were surprised at
how much their preteen was able to do in managing their own
pump therapy. Older teens had largely taken full responsibility for
managing their diabetes. Yet, the transfer of diabetes management
was not always linear. Sometimes younger teens forgot to bring
supplies with them or became tired of chronic disease management
and fell back to relying on their parents. The pump facilitated this
transition of diabetes management from parent to child. Also, they
could always download their teen’s pump metrics to maintain
accountability (Table 2, Quote 10).
By contrast, the young adults often admitted to not taking their
care seriously until transitioning to adulthood. For many, the
change to postsecondary education or the transition from pediatric
to adult care was the impetus for taking their diabetes management
more seriously. They saw technology as a tool to help take better
control of their diabetes (Table 2, Quote 11).
A common worry across all age groups was the potential need
to go back to injections. Some young children and also preteens
worried about going back to needles because they thought they
were more painful. Many young adults worried about their
ability to afford the insulin pump or whether they would have a
job with employment benefits to help them pay for the pump at
age 26 when they would no longer qualify for NSIPP support
(Table 2, Quote 12).
Participants were largely hopeful for the future. Pump com-
panies had proven to be very responsive to pump failures in the
past, so participants did not worry about their pump failing, nor
did they worry about their site failing and the risk of diabetic
ketoacidosis. They hoped for a cure for diabetes or a true closed-
loop system. Because insulin pumps are one half of a closed-loop
system, they saw the pump as a step toward this future goal
(Table 2, Quote 13).
Discussion
In this study, we have provided a patient and parent perspective
on the impacts on quality of life of insulin pump therapy within the
context of a government-funded program. Many of the findings are
similar to past qualitative studies of insulin pumps, but our results
are specific to the context of government-funded programs and
drew from participants across the province, not only those in ter-
tiary care centres. The context of a province-wide government-
funded program provides the opportunity to give voice to insulin
pump users who for financial reasons, may otherwise not have
been able to access a pump. Previous qualitative studies on this
topic recruited from tertiary care centres across the eastern United
States and from 4 Scottish diabetes care clinics (22,23,28). We
found that, within the context of this provincial program, findings
were largely consistent with previous research on insulin pumps
and quality of life. Our study was unique in that it included patients
aged 4 to 25 years, allowing for the comparison of 3 age groups that
revealed how the impact of insulin pump therapy on quality of life
varied by the 5 stages of life that emerged. Although not a longi-
tudinal study, it provides a picture of how insulin pump use and
quality of life may change through the young person’s life course.
The NSIPP facilitated improvements in quality of life because it
provided financial support, resulting in access to pump therapy. To
be eligible for the NSIPP, enrollees are required to receive care from
speciality diabetes care teams at NSIPP-approved diabetes centres.
This specialized care, which aims to optimize insulin pump therapy
and its associated benefits, was viewed positively by participants.
However, NSIPP introduced a new diabetes worry for participants;
they worried about the day that they or their child would turn 26
years of age and no longer qualify for the program. As such, par-
ticipants hoped that the NSIPP’s coverage would expand in the
future to either raise or remove the age limit. Currently, 6 prov-
inces/territories in Canada cover the costs of insulin pumps for all
ages, 6 for those up to ages 18, 19 or 25 (depending on the province
or territory), and Newfoundland and Labrador removed the age
restriction for those already enrolled in the program in 2019 (29).
 E. Haynes et al. / Can J Diabetes 45 (2021) 395e402
Pump coverage varies across the country, leading to unequal access
to this therapy that is highly sought after by patients with diabetes
and has been demonstrated to positively impact quality of life. This
study has provided policymakers with the positive feedback that
the NSIPP is important and appreciated, but it also reveals that
enrollees and their parents feel stressed knowing that the program
ends at age 26.
Having increased control over one’s life and diabetes was how
participants experienced an improved quality of life. Past studies on
insulin pumps and quality of life have highlighted increased flexi-
bility in lifestyle, meals and social situations; fewer painful injec-
tions; perceived ease of disease management and perceived
improvement in metabolic control (22,23,28,30e33). Respect for
autonomy and respect for persons are guiding ethical principles in
medicine. The International Society for Pediatric and Adolescent
Diabetes guidelines highlight the importance of individualizing
insulin therapy based on patient preference and glycemic control
(6). This study’s findings can be seen in the light of the importance
of autonomy and respect for persons. By orienting practice toward
optimizing patients’ feelings of control or autonomy, clinicians and
program planners can improve patients’ quality of life.
Participants had many worries that were alleviated by the
pump. Interestingly, some things that may seem concerning to a
health-care provider were not given much weight by participants.
For example, participants did not mention worrying about pump,
site failure and the risk of diabetic ketoacidosis nor did they worry
about pump malfunction. If the pump did fail, they thought the
pump companies were trustworthy and quick to send a new pump
if needed. In contrast, the risk of site failure resulting in diabetic
ketoacidosis is a major concern for clinicians and a focus of patient
education efforts (6). This study provides important insight for
clinicians when educating their patients who use a pump to be
aware of this potential mismatch in levels of concern with regard to
site failure, pump malfunction and the risk of diabetic ketoacidosis.
Feelings of shame or embarrassment have been reported in
patients with diabetes (34e36). An example of feelings of control
over life and diabetes being expressed differently depending on
stage of life was how some teens and many young adult partici-
pants felt that pump therapy helped them become more comfort-
able with their diabetes, with some wearing their pump with pride.
Feelings of pride in wearing a pump have not been widely reported
in the literature (2 youth discussed this in a 2018 study) (37).
Feelings of wearing a pump with pride are seen in social media
posts with hashtags, such as #showmeyourpump, inspired by a
contestant in an American pageant who wore her pump on stage
(38). Thus, there appears to be some evidence of pump users
wearing their pump with pride, but this topic has not been reported
substantially in the literature. This study showed that feelings of
pride became stronger with age and experience, and some young
adults stated that past feelings of shame had grown to pride; their
pump was a visual representation of their diabetes and their
openness to disclosing it to others. Feelings of shame or embar-
rassment in diabetes are associated with poorer glycemic control
and more frequent episodes of hypoglycemia. Therefore, the posi-
tive impacts of insulin pumps on feelings of shame and embar-
rassment have major implications for diabetes management in
young people. Clinicians should be aware that their younger
patients may feel shameful or hide their pump from others, and
they should incorporate relevant counselling into care. Further-
more, clinicians may want to incorporate the potential for
increased pride or self-confidence in their counselling when dis-
cussing possible transition to pump therapy for older teens and
young adults.
Particular strengths of this study included the variety and
representativeness of perspectives and the rigour in data analysis.
Use of purposive selection ensured that participants represented
401
various ages, time using an insulin pump, time since diagnosis and
both urban and rural regions of the province, and ensured that
voice was given to participants from disproportionate demographic
backgrounds (e.g. more people tend to live in urban vs rural cen-
tres). This approach allowed for exploration of nuance by explicitly
searching for expected discordant viewpoints or experiences,
resulting in a more complete understanding of the impact of the
NSIPP and greater transferability to other contexts (25). Both
patients and parents were included. Data analysis was completed
by 2 researchers, which increased the methodologic rigour and
reduced the chance of bias. However, there were limitations. Par-
ticipants had chosen a pump over multiple daily injection either for
themselves or their child; those who made the opposite choice
were not included. Interviews occurred only after NSIPP support for
pump therapy, so respondents needed to think back to compare life
before their participation in the program. To address this potential
bias, participants were asked about the negative aspects of having
an insulin pump from their point of view and were asked to
consider what life was like before and after using the pump. They
were able to name some minor inconveniences, but many qualified
these with a statement that weighed the benefits of the pump more
substantially than any limitations. Because NSIPP enrollees must
meet certain medical eligibility criteria, it is possible that study
participants had better diabetes self-management compared with
all insulin pump users. Finally, we were unable to link our findings
to measures of glycemic control.
Conclusions
Among patients enrolled in the NSIPP and their parents, insulin
pump therapy improved quality of life, which participants
expressed as control over their life and diabetes. Pumps facilitated
more spontaneity in life with less worry. The way that these were
experienced differed based on the pump user’s stage of life. The
NSIPP was valued for improving access to insulin pump therapy,
and enrollee’s interactions with the NSIPP coordinator and NSIPP-
approved diabetes centre teams were positive. Governments
should consider how to address the stresses of programs that are
designed with an upper age limit.
Supplementary Material
To access the supplementary material accompanying this article,
visit the online version of the Canadian Journal of Diabetes at www.
canadianjournalofdiabetes.com.
Acknowledgments
The authors thank the NSIPP coordinator, Courtney Fortune, for
the time she dedicated to this project and for the positive rela-
tionships she has built with the patients and families enrolled in
the NSIPP; the Diabetes Care Program of Nova Scotia (DCPNS) for
providing funding for transcription services; Maggie Flemming for
assistance with manuscript preparation; and the study partici-
pants, without whom this research would not have been possible.
We also sincerely appreciate the financial support provided to E.H.
through a Research in Medicine studentship from the Dalhousie
Medical Research Fund Lalia B. Chase Studentship. The DCPNS
provides oversight of the NSIPP-approved diabetes centre pro-
cesses and approaches, as well as NSIPP evaluation and database
expertise and supports. Evaluation of NSIPP processes and out-
comes has been a key focus of the DCPNS since the program’s
inception in 2013. The DCPNS provided this study with financial
support for interview transcription and the analysis software used
for thematic coding.
402 E. Haynes et al. / Can J Diabetes 45 (2021) 395e402

Author Disclosures 15. Cohen D, Weintrob N, Benzaquen H, Galatzer A, Fayman G, Phillip M. Contin-
uous subcutaneous insulin infusion versus multiple daily injections in ado-
lescents with type I diabetes mellitus: A randomized open crossover trial.
Conflicts of interest: None. J Pediatr Endocrinol Metab 2003;16:1047e50.
16. Wilson DM, Buckingham BA, Kunselman EL, Sullivan MM, Paguntalan HU,
Gitelman SE. A two-center randomized controlled feasibility trial of insulin
Author Contributions pump therapy in young children with diabetes. Diabetes Care 2005;28:
15e9.
17. O’Neil KJ, Jonnalagadda SS, Hopkins BL, Kicklighter JR. Quality of life and dia-
E.H. contributed to the study design, drafted the protocol, betes knowledge of young persons with type 1 diabetes: Influence of treatment
completed the telephone interviews, coded and analyzed the data modalities and demographics. J Am Diet Assoc 2005;105:85e91.
and wrote the initial drafts of the manuscript. M.L. coded and 18. Shehadeh N, Battelino T, Galatzer A, et al. Insulin pump therapy for 1-6 year old
children with type 1 diabetes. Isr Med Assoc J 2004;6:284e6.
analyzed the data and critically revised the manuscript. P.T.
19. Blair J, McKay A, Ridyard C, et al. Continuous subcutaneous insulin infusion
contributed to the study design, facilitated subject recruitment and versus multiple daily injections in children and young people at diagnosis of
critically revised the manuscript. M.D. contributed to the study type 1 diabetes: The SCIPI RCT. Health Technol Assess 2018;22:1e112.
design and critically revised the manuscript. E.C. conceived the 20. Cherubini V, Gesuita R, Bonfanti R, et al. Health-related quality of life and
treatment preferences in adolescents with type 1 diabetes. The VIPKIDS study.
initial idea and guided the study design, participated in analysis Acta Diabetol 2014;51:43e51.
and guided manuscript writing and revision. 21. Sullivan-Bolyai S, Knafl K, Tamborlane W, Grey M. Parents’ reflections on
managing their children’s diabetes with insulin pumps. J Nurs Scholarsh 2004;
36:316e23.
References 22. Rankin D, Harden J, Noyes K, Waugh N, Barnard K, Lawton J. Parents’ experi-
ences of managing their child’s diabetes using an insulin pump: A qualitative
study. Diabet Med 2015;32:627e34.
1. Wherrett DK, Ho J, Huot C, Legault LN, Rosolowsky E. Diabetes Canada Clinical
23. Alsaleh FM, Smith FJ, Thompson R, Al-Saleh MA, Taylor KMG. Insulin pump
Practice Guidelines Expert Committee. Diabetes Canada clinical practice
therapy: Impact on the lives of children/young people with diabetes mellitus
guidelines: Chapter 34 Type 1 diabetes in children and adolescents. Can J
and their parents. Int J Clin Pharm 2014;36:1023e30.
Diabetes 2018;42(Suppl):S234e46.
24. Nova Scotia Department of Health and Wellness. Insulin pump program
2. Misso ML, Egberts KJ, Page M, O’Connor D, Shaw J. Continuous subcutaneous
copayment pump calculator. https://novascotia.ca/dhw/NSIPP/NSIPP-
insulin infusion (CSII) versus multiple insulin injections for type 1 diabetes
calculator.asp. Accessed August 14, 2020.
mellitus. Cochrane Database Syst Rev 2010:l CD005103.
25. Green J, Thorogood N. Qualitative Methods for Health Research. 2nd edn.
3. Benkhadra K, Alahdab F, Tamhane SU, McCoy RG, Prokop LJ, Murad MH.
London: Sage, 2009.
Continuous subcutaneous insulin infusion versus multiple daily injections in
26. Skinner TC, Hoey H, McGee HM, Skovlund SE, Hvidøre Study Group on Child-
individuals with type 1 diabetes: A systematic review and meta-analysis.
hood Diabetes. A short form of the Diabetes Quality of Life for Youth ques-
Endocrine 2017;55:77e84.
tionnaire: Exploratory and confirmatory analysis in a sample of 2,077 young
4. Qin Y, Yang L-H, Huang X-L, Chen X-H, Yao H. Efficacy and safety of continuous
people with type 1 diabetes mellitus. Diabetologia 2006;49:621e8.
subcutaneous insulin infusion vs. multiple daily injections on type 1 diabetes
27. Polonsky WH, Fisher L, Earles J, et al. Assessing psychosocial distress in dia-
children: A meta-analysis of randomized control trials. J Clin Res Pediatr
betes: Development of the diabetes distress scale. Diabetes Care 2005;28:
Endocrinol 2018;10:316e23.
626e31.
5. Yeh H-C, Brown TT, Maruthur N, et al. Comparative effectiveness and safety of
28. Sullivan-Bolyai S, Knafl K, Tamborlane W, Grey M. Parents’ reflections on
methods of insulin delivery and glucose monitoring for diabetes mellitus: A
managing their children’s diabetes with insulin pumps. J Nurs Scholarsh 2004;
systematic review and meta-analysis. Ann Intern Med 2012;157:336e47.
36:316e23.
6. Danne T, Phillip M, Buckingham BA, et al. ISPAD Clinical Practice Consensus
29. Juvenile Diabetes Research Foundation. Take action: Help remove age restric-
Guidelines 2018: Insulin treatment in children and adolescents with diabetes.
tions on insulin pump coverage. https://e-activist.com/page/12233/action/1?
Pediatr Diabetes 2018;19:115e35.
locale¼en-CA. Accessed July 1, 2019.
7. Rosner B, Roman-Urrestarazu A. Health-related quality of life in paediatric
30. Hirose M, Beverly EA, Weinger K. Quality of life and technology: Impact on
patients with type 1 diabetes mellitus using insulin infusion systems. A sys-
children and families with diabetes. Curr Diab Rep 2012;12:711e20.
tematic review and meta-analysis. PLoS One 2019;14:e0217655.
31. Júlíusson PB, Graue M, Wentzel-Larsen T, Søvik O. The impact of continuous
8. Mueller-Godeffroy E, Vonthein R, Ludwig-Seibold C, et al. Psychosocial benefits
subcutaneous insulin infusion on health-related quality of life in children and
of insulin pump therapy in children with diabetes type 1 and their families:
adolescents with type 1 diabetes. Acta Paediatr 2006;95:1481e7.
The Pumpkin Multicenter Randomized Controlled Trial. Pediatr Diabetes 2018;
32. Mednick L, Cogen FR, Streisand R. Satisfaction and quality of life in children
19:1471e80.
with type 1 diabetes and their parents following transition to insulin pump
9. Nuboer R, Borsboom GJJM, Zoethout JA, Koot HM, Bruining J. Effects of insulin
therapy. Child Health Care 2004;33:169e83.
pump vs. injection treatment on quality of life and impact of disease in children
33. Wilson V. Experiences of parents of young people with diabetes using insulin
with type 1 diabetes mellitus in a randomized, prospective comparison. Pediatr
pump therapy. Paediatr Nurs 2008;20:14e8.
Diabetes 2008;9:291e6.
34. Ferrari M, McIlwain DJF, Ambler G. A qualitative comparison of needles and
10. Birkebaek NH, Kristensen LJ, Mose AH, Thastum M. Danish Society for Diabetes
insulin pump use in children with type 1 diabetes. J Health Psychol 2018;23:
in Childhood and Adolescence. Quality of life in Danish children and adoles-
1332e42.
cents with type 1 diabetes treated with continuous subcutaneous insulin
35. Easler JK, Haueter HM, Roper SO, Freeborn D, Dyches T. Reasons for open and
infusion or multiple daily injections. Diabetes Res Clin Pract 2014;106:474e80.
closed attitudes regarding type 1 diabetes. Diabetes Spectr 2018;31:37e46.
11. Rendell S, Kosoko-Lasaki O, Penny G, et al. Improved quality of life in unse-
36. Sparapani VdC, Jacob E, Nascimento LC. What is it like to be a child with type 1
lected insulin pump-treated children with type 1 diabetes in Eastern Nebraska.
diabetes mellitus? Pediatr Nurs 2015;41:17e22.
J Diabetes Sci Technol 2013;7:579e81.
37. Altmann E, Stirling C, Broad L. Experiences and decision making during pae-
12. Lukács A, Kiss-Tóth E, Varga B, Soós A, Takác P, Barkai L. Benefits of continuous
diatric transitions to continuous sub-cutaneous insulin infusion (CSII): A mixed
subcutaneous insulin infusion on quality of life. Int J Technol Assess Health Care
method study. Digit Heal 2018;4:2055207618806083.
2013;29:48e52.
38. Brazeau A-S, Nakhla M, Wright M, et al. Stigma and its association with gly-
13. Wu YP, Graves MM, Roberts MC, Mitchell AC. Is insulin pump therapy better
cemic control and hypoglycemia in adolescents and young adults with type 1
than injection for adolescents with diabetes? Diabetes Res Clin Pract 2010;89:
diabetes: Cross-sectional study. J Med Internet Res 2018;20:e151.
121e5.
39. Diabetes Care Program of Nova Scotia. Nova Scotia Insulin Pump Program
14. Weintrob N, Benzaquen H, Galatzer A, et al. Comparison of continuous sub-
Outcome Evaluation: 2013/14-2015/16 Executive Summary. https://www.
cutaneous insulin infusion and multiple daily injection regimens in children
cdha.nshealth.ca/diabetes-care-program-nova-scotia/department-health-and-
with type 1 diabetes: A randomized open crossover trial. Pediatrics 2003;112:
wellness-nova-scotia-insulin-pump-program-nsipp. Accessed June 10, 2020.
559e64.