Running head: LIVING WELL WITH LONG TERM TYPE 1 DIABETES

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LIVING WELL WITH LONG TERM TYPE 1 DIABETES
By
Donna Epp

A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF
THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING

in
THE FACULTY OF GRADUATE STUDIES
We accept this thesis as conforming to the required standard

Dr. Sonya Grypma, Thesis Supervisor
Dr. Barbara Astle, Second Reader
Dr. Betty Jean Tucker, External Examiner

TRINITY WESTERN UNIVERSITY
July 2017
© Donna Epp

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Abstract
Although many studies have explored the experience of the person with type 1 diabetes, most
examine the experience of the child, adolescent, or the person in transition to adulthood. Few
studies focus on the person living long term with type 1 diabetes. This study explored the
facilitators and barriers to living well with type 1 diabetes for the long term. Four themes were
identified: accommodating and battling the disease, the convenience and constraint of
technology and treatment, self-reliance and reliance on others, and external and personal
knowledge. Implications for the health care team include: recognize the person is the expert on
their diabetes and develop a relationship of collegiality and problem solving; as the context of a
person’s life affects their diabetes management, have conversations about life, beyond just
diabetes control; and screen for, learn about, and be aware of ways to address diabetes distress.

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Acknowledgements
Achieving my Masters in Nursing has been a goal of mine for many years. The plan was
to meet this goal by the age of 50 and achieve my doctorate by the age of 60. However, life
intervened. With a good job that I loved, raising children, and wanting to contribute to my
church and family, the goal fell to the wayside. Now in the twilight of my working years, God
provided the circumstances to achieve this goal. He led me to a part time job that encouraged
education, my youngest child was graduating high school, and I found Trinity Western
University. Finding Trinity Western allowed me to combine my faith with my education. How
often can a graduate student say her instructors are praying for her! So, my first thanks goes to
the Trinity Western community. I especially thank Dr. Sonya Grypma, my supervisor for
guiding me through this thesis. We didn't agree on everything, but we disagreed respectfully,
until we could come to some kind of common ground, which resulted in a better product.
Thanks for pushing me Sonya! Thanks, also to Dr. Barbara Astle, who helped me stay true to
the Interpretive Description Methodology.
Thank you to my family, who has had to put up with long absences, as I applied myself to
this project. My husband Ed, especially, supported me whole heartedly, although I am sure he
wished it would have ended sooner. Both my sons, Justin and James, supported me by helping
with homework (especially the dreaded Math Stats). Justin cooked for me and was always
interested in my courses. James was there for proofing and tech support. And my daughter-inlove Nashly supported me in prayer and lots of love, especially when the Big C invaded my life
in the last stages of this thesis. I cannot miss mentioning my grandson Peter, who has brought
me so much joy, sometimes a welcome distraction to thesis work, so I went back refreshed!

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I would also like to thank my Masters cohort. I have made lasting friendships through
this group. Special thanks go to Julianne House, Mary DeLong, and Michele Regher whose
love, support and prayers held me up and helped me make this a reality.
I would like to thank my friends, extended family and church family. You put up with
long absences from me, while I made this goal come true. But you never deserted me, as was
obvious when I was diagnosed with cancer. The meals, the rides, the wigs, the hats...so many
people stepped up to help. Thank you as well for helping me achieve this goal.
This project would not have occurred without the generous contribution of the
participants who have lived with type 1 diabetes for 40 years or more. Thank you for being
willing to share your experiences. Also thank you to Lori Berard, Nurse Manager of a Diabetes
Research Group, and Andrea Kwasnicki the Regional Director of the Canadian Diabetes
Association (Manitoba/Nunavut) who assisted me in recruiting the participants. Your help was
invaluable to this project.
Finally, I received financial contributions through several venues. Thank you to:


the Canadian Nurses Foundation – Helen Glass Scholarship– 2016



Trinity Western University Master of Science in Nursing Achievement Award - 2015



the Foundation of Registered Nurses of Manitoba Graduate Award –-2015



the Diabetes Educator Education Section of the Canadian Diabetes Association Eli
Lilly Graduate Scholarship– 2015



PEO Program Continuing Education Award – 2014

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Table of Contents
Abstract.......................................................................................................................................... 2
Acknowledgements ....................................................................................................................... 3
CHAPTER ONE: INTRODUCTION AND BACKGROUND ................................................. 8
Background ..................................................................................................................................... 8
The Importance of this Research to Nursing ................................................................................ 11
Purpose of Research ...................................................................................................................... 11
Research Question ........................................................................................................................ 12
Method .......................................................................................................................................... 12
Outline of Thesis ........................................................................................................................... 12
CHAPTER TWO: LITERATURE REVIEW .......................................................................... 14
Search and Retrieval Strategies for Literature .............................................................................. 14
Children and Adolescents with Diabetes ...................................................................................... 14
Transition to Adulthood ................................................................................................................ 16
Adults with Type 1 Diabetes......................................................................................................... 18
Summary of the Literature ............................................................................................................ 24
CHAPTER THREE: RESEARCH DESIGN, METHOD, AND PROCEDURES................ 25
Study Design - Interpretive Description ....................................................................................... 25
Sample/Data Collection ................................................................................................................ 26
Data Analysis ................................................................................................................................ 28
Scientific Quality .......................................................................................................................... 29
Credibility .............................................................................................................................. 29
Dependability......................................................................................................................... 30
Confirmability........................................................................................................................ 30
Transferability........................................................................................................................ 31
Authenticity ........................................................................................................................... 31
Limitations .................................................................................................................................... 31
Ethical Considerations .................................................................................................................. 31
Chapter Summary ......................................................................................................................... 33
CHAPTER FOUR: FINDINGS ................................................................................................. 34
Introduction ................................................................................................................................... 34
Diagnosis....................................................................................................................................... 35
Theme 1: Accommodating and Battling the Disease ................................................................... 36
1.1 Routine............................................................................................................................. 36
1.2 Losses and Fears............................................................................................................... 38
1.3 Unrelenting ....................................................................................................................... 44
Theme 2: Convenience and Constraint of Technology and Treatment ....................................... 50

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2.1 Technology/Treatment as Convenience ............................................................................ 50
2.2 Technology/Treatment as Task Master ........................................................................... 53
Theme 3: Self Reliance and Reliance on Others ......................................................................... 55
3.1 Family Support ................................................................................................................. 55
3.2 Medical Management and Self Management .................................................................... 57
3.3 System Dependence ......................................................................................................... 60
Theme 4: External and Personal Knowledge ............................................................................... 62
4.1 Knowledge Seeking ......................................................................................................... 63
4.2 Lack of Knowledge of Others.......................................................................................... 64
Chapter Summary ......................................................................................................................... 66
CHAPTER FIVE: DISCUSSION.............................................................................................. 70
Ages and Stages of Type 1 Diabetes............................................................................................. 70
Stigma and Loss ............................................................................................................................ 72
Diabetes Distress ........................................................................................................................... 73
Technology as a Burden................................................................................................................ 75
Relationships with Health Professionals ....................................................................................... 76
Diabetes Education ....................................................................................................................... 77
Lack of Community Knowledge ................................................................................................... 78
Chapter Summary ......................................................................................................................... 78
CHAPTER SIX: CONCLUSIONS AND RECOMMENDATIONS ...................................... 80
Beyond Evaluation Criteria........................................................................................................... 80
Moral Defensibility................................................................................................................ 81
Disciplinary Relevance .......................................................................................................... 81
Pragmatic Obligation ............................................................................................................. 82
Contextual Awareness ........................................................................................................... 82
Probable Truth ....................................................................................................................... 83
Implications for Practice and Further Research ............................................................................ 83
Relationships with Health Care Providers ............................................................................. 83
Special Considerations for those Living with Long Term Type 1 Diabetes ......................... 84
Diabetes distress................................................................................................................. 84
Losses related to type 1 diabetes. ....................................................................................... 85
Aging and type 1 diabetes. ................................................................................................. 85
Technology as benefit or burden........................................................................................ 86
Diabetes Education ................................................................................................................ 87
Formal diabetes education. ................................................................................................ 87
Tapping into the expertise. ................................................................................................. 88
Chapter Summary ......................................................................................................................... 88
Conclusion .................................................................................................................................... 89
References .................................................................................................................................... 90

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Appendix A – Literature Search Decision Tree ....................................................................... 98
Appendix B - Recruitment Poster ............................................................................................. 99
Appendix C - Recruitment Letter ........................................................................................... 100
Appendix D - Email for Canadian Diabetes Association Listserve ...................................... 101
Appendix E - Interview Questions and Prompts ................................................................... 102
Appendix F - Debriefing Script ............................................................................................... 103
Appendix G - Consent Form .................................................................................................... 104

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CHAPTER ONE: INTRODUCTION AND BACKGROUND
Pancreatic beta cell destruction results in type 1 diabetes. This destruction can be due to
an autoimmune process or from an unknown etiology (Goldenberg & Punthakee, 2013). To live,
the person with type 1 diabetes has to take exogenous insulin. Since the discovery of insulin,
and with the many advances in diabetes management, people with type 1 diabetes have been
living longer. Although many studies have explored the experience of the person with type 1
diabetes, most examine the experience of the child, adolescent, or the person in transition to
adulthood. In contrast there are few studies that focus on the person living long term with type 1
diabetes. The purpose of this study was to explore the facilitators and barriers to living well with
diabetes over the lifespan for those people who have lived long term with type 1 diabetes.
Background
Although there is evidence that diabetes has been part of the human experience since
earliest recorded history, it was not until the discovery of insulin in 1921/22 by Banting, Best,
McLeod, Collip, and others (Bliss & Purkis, 1982, p. 6) that the history of type 1diabetes
dramatically changed. Prior to 1922, a diabetes diagnosis was considered a death sentence. As
Ateteus of Cappadocia wrote in the 2nd century, diabetes was:
an affliction that is not very frequent. . .being a melting down of the flesh and limbs into
the urine. . .life is short, disgusting and painful. . .thirst unquenchable. . .the kidneys and
bladder never stop making water. . .(as cited in Eknoyan & Nagy, 2005, p. 224)
Thus, the discovery of insulin was a breakthrough, allowing for type 1 diabetes to be transformed
from a terminal illness to a chronic disease.
As remarkable as the discovery of insulin was, however, it was not a cure for type 1
diabetes. To manage the disease, persons with type 1 diabetes continued to require exogenous

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insulin to survive. In addition, as people began to live longer with the use of insulin, a whole
new set of complications arose. Within the first fifteen to twenty years of insulin therapy, people
with type 1 diabetes began to experience microvascular complications affecting the eyes, kidneys
and nerves, and macrovascular complications resulting in cardiovascular disease (Nathan &
DCCT/EDIC Research Group, 2014). The Diabetes Control and Complications Trial (DCCT),
which began in 1982 and was completed in 1993, studied the prevention of the complications of
type 1 diabetes (Nathan & DCCT/EDIC Research Group, 2014). The DCCT “demonstrated the
effectiveness of INT [intensive insulin therapy] in reducing the long-term complications of
T1DM [type 1 diabetes mellitus] and improving the prospects for a healthy life span” (Nathan &
DCCT/EDIC Research Group, 2014, p. 9).
Many advances in diabetes management have been made since the discovery of insulin
and since the DCCT. These include: the development of biosynthetic insulin; new ways of
delivering insulin such as disposable insulin syringes and needles that are less painful and
convenient to use, insulin pens, and insulin pumps; self blood glucose monitoring, which
promotes the self management of the disease rather than medical management; measurements of
glycated hemoglobin, which provides a basis for health care professionals to determine and alter
management; and pancreas or islet cell transplants (Bruni, Gala-Lopez, Pepper, Abualhassan, &
Shapiro, 2014; Polonsky, 2012). The innovations continue today as new hormones are being
identified that may be useful for diabetes management (Ahrén, 2015) and non-invasive glucose
monitors become available (Distiller, Cranston & Mazze, 2016).
Since the discovery of insulin, the number of people being diagnosed with type 1 diabetes
has grown exponentially. As noted by Rosenfeld (2002), "there was an unexpected by-product
to the discovery of insulin. Diabetic individuals lived longer and passed the hereditary

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component of this disease to their children" (p. 2286). A steady increase in the genetic
component of the disease being passed to following generations was the result. As noted in the
Public Health Agency of Canada document Diabetes in Canada: Facts and Figures from a
Public Health Perspective:
Canada was found to have one of the highest incidence rates of type 1 diabetes for
children under 14 years of age. In Canada, the average relative increase in incidence
rates has been estimated at 5.1% per year between 1990 and 1999. Children under the
age of five were the fastest growing segment of the population with type 1 diabetes.
(Pelletier, Dai, Roberts, & Bienek, 2012, para 6)
Along with increasing numbers of people with type 1 diabetes, the person with type 1
diabetes is also experiencing an increasingly longer lifespan. A study in 1975 by Goodkin (as
cited in Miller, Secrest, Sharma, Songer, & Orchard, 2012) suggested that the life expectancy of
those with type 1 diabetes in the United States with a diagnosis age of less than 15 years was
reduced 27 years compared with individuals without diabetes. In Canada, almost 40 years later,
the Public Health Agency of Canada reported that females with diabetes will lose an estimated
11.1 years in health adjusted life expectancy, while males will lose 10.8 years (Pelletier et al.,
2012). Miller, Secrest, Sharma, Songer, and Orchard (2012) completed a study in Pittsburgh
which further identified a trend towards the closing gap of lifespan for the person with type 1
diabetes and those without. This study delineated between those people with type 1 diabetes
born in the 1950-60s and those born in the 1960s and 70s. Those born in the earlier decade have
a 17-year loss of life expectancy, whereas those born in the later decade have only a four to six
year loss of life expectancy.

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Essentially, improvements in diabetes management and an increase in the number of
people being diagnosed with type 1 diabetes have resulted in a greater number of people living
longer with the disease. As a part of life, they must adhere to administering insulin, match
insulin to their food intake, check blood glucose regularly, monitor their diet, be active and
maintain medical appointments. As a result, the person with type 1 diabetes is constantly
balancing “regimens with physical and psychosocial well-being” (Scholes et al., 2013, p. 1236).
More and more people are living more than 40 years with type 1 diabetes. This study will
provide the opportunity to learn from people who have lived with the chronic disease of type 1
diabetes for forty years or more.
The Importance of this Research to Nursing
People with type 1 diabetes have provided a rich cache of information for research on
living chronically with a complex disease. The main participants, though, have been children,
adolescents, or young adults. In contrast there are few studies that focus on the person living
long term with type 1diabetes. And of those that do examine the experience of the adult with
diabetes, most focus on a specific type of experience – such as stigma or compliance with
treatment. Little attention has been paid to what it means to live well with diabetes over many
years.
Purpose of Research
The purpose of this study is to explore the facilitators and barriers to living well with
diabetes over the lifespan for those people who have lived long term with type 1 diabetes. Forty
years of diabetes or more allows for discussion with participants aged 40 and up. Thus,
participants who are still in their working years and participants who are in the retirement years
will be included. Better understanding the experience of type 1 diabetes directly from those who

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have lived with it long term will assist health care providers to shape care to meet the needs of
this population.
Research Question
The overarching research question guiding this study was: What do persons living with
type 1 diabetes for 40 years or more perceive as facilitators and barriers to living well with
diabetes? The main questions guiding this study were:
1. How do persons living with long term type 1 diabetes define “living well” with diabetes?
2. What do persons with long term type 1 diabetes perceive as facilitators to living well with
diabetes across their lifespan?
3. What do persons with long term type 1 diabetes perceive as barriers to living well with
diabetes across their lifespan?
4. How might health care providers support “living well” with long term type 1 diabetes?
Method
A qualitative research method was chosen using interpretive description. Data was
collected from eight participants with type 1 diabetes through semi-structured interviews. The
interviews were transcribed and the data was coded. Then thematic analysis was employed to
find meaning in the data.
Outline of Thesis
This thesis is comprised of six chapters. In this first chapter, the background, the
significance of this research to nursing, the purpose of the research, the research questions, and a
brief description of the method are outlined. Chapter Two focuses on the literature review,
including the search and retrieval strategies. Chapter Three describes the methodology, as

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guided by interpretive description, including data collection, analysis, scientific quality,
limitations, and ethical considerations. Chapter Four outlines the findings and Chapter Five, the
discussion chapter, discusses the findings within the context of what is already known in the
literature. Finally, Chapter Six provides the implications that the study has for health
professionals working with people with long term type 1 diabetes.

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CHAPTER TWO: LITERATURE REVIEW
A literature review was conducted to provide the "scaffolding for the study" (Thorne,
2016, p. 60), by determining the current state of knowledge on the chosen topic. The literature
search provided information on gaps in knowledge and substantiated the need for this research.
Search and Retrieval Strategies for Literature
A literature search using the terms "type 1 diabetes" OR "diabetes mellitus, type 1" AND
"life experience" OR "living with" was completed using CINAHL, MEDLINE, Google Scholar,
and the Canadian Journal of Diabetes. A decision tree was created that outlines the number of
research articles found and how decisions were made to choose the articles to include in the
review (See Appendix A). A total of 23 articles were reviewed prior to the study. A further
literature review closer to the end of the study netted four further articles for a total of 27. Since
the focus of this study was to explore the experience across the lifespan of the person with long
term type 1 diabetes, the articles were categorized into the following: children and adolescent
experience; transition to adulthood; and adult experience.
Children and Adolescents with Diabetes
Numerous studies have explored the experience of children and adolescents with diabetes
(Babler & Strickland, 2015b; Burke & Dowling, 2007; Freeborn, Dyches, Roper & Mandleco,
2013; Gannoni & Shute, 2010; Gomes & do Espírito Santo, 2015; Huus & Enskär, 2007;
Marshall, Carter, Rose, & Brotherton, 2009; Scholes et al., 2013; Spencer, Cooper, & Milton,
2013). The concept of ‘normal’ is highlighted by a number of studies for both children and
adolescents (Babler & Strickland, 2015b; Freeborn et al., 2013; Huus & Enskär, 2007; Marshall
et al., 2009; Spencer et al., 2013). Marshall et al. (2009) suggested that normal is dominant in
the lives of the children and adolescents they interviewed because “diabetes not only makes these

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families different, but also makes their pursuit of ‘normal’ more visible” (p. 1703). Babler and
Strickland (2015b) developed the theory of normalizing through their interviews with
adolescents, describing challenges that hindered the “pursuit of normalcy” (Freeborn et al., 2013,
p. 1891). In the Huus and Enskär (2007) study of adolescents with type 1 diabetes, the
participants compared themselves to their friends to describe what they felt was normal. These
authors suggest that the life experience of the participants is a “pendulum swinging between
being normal and being different” (Huus & Enskär, 2007, p. 29). Identified hindrances to being
normal included: the difficulty of preventing hypoglycemia, especially when activity is irregular
as play and sports often are; having to choose to not eat the treats that others are having; daily
hassles of insulin injections and blood testing; telling others about diabetes; the need for support
from friends, parents, and school personnel; and the feeling of being different or isolated (Burke
& Dowling, 2007; Freeborn et al., 2013; Huus & Enskär, 2007).
In concert with the concept of normalization, several researchers have explored barriers
to normal including diabetes distress and stress specifically in the adolescent population. A
systematic review of diabetes distress (DD) among adolescents (Hagger, Hendrieckx, Sturt,
Skinner, & Speight, 2016) indicated that around one third of adolescents experience diabetes
distress, described as "the negative emotions arising from living with diabetes and the burden of
self management" (p. 1). DD has been affiliated with deteriorating blood glucose control, lower
self efficacy, reduced self-management, poor quality of life, and depressive symptoms (Hagger
et al., 2016; Jaser, Patel, Xu, Tamborlane, & Grey, 2016). Coping is challenged by "the
adolescent's quest for independence, balancing blood sugars, and integrating diabetes" which
often leads to increased conflict with parents (Babler & Strickland, 2016, p. 123). As well

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adolescents report stress related to feeling different from peers, guilt related to imperfect blood
sugars, and feelings of burnout from the daily grind of diabetes care (Jaser et al., 2016).
Although stress and diabetes distress are noted in adolescents with type 1 diabetes,
Gannoni and Shute (2010) found that children and adolescents with chronic illnesses identified
positive adaptive processes as well, such as learning about their disease and learning self-control
strategies related to diet. Huus and Enskär (2007) found similar results in their study, with the
adolescents indicating they had more knowledge of healthy lifestyles than their friends.
Transition to Adulthood
Several researchers have explored the next step in diabetes management - the transition to
adulthood (Babler & Strickland, 2015a; Balfe et al., 2013; Karlsson, Arman, & Wikblad, 2008;
Kay, Davies, Gamsu, & Jarman, 2009; Samson, 2006; Sparud-Lundin, Öhrn, & Danielson,
2010). Diabetes management is complex and requires self efficacy, good problem solving skills,
the knowledge and the ability to manage the many physical tasks related to diabetes, and the
constant emotional adjustment of living with a chronic illness (Babler & Strickland, 2015a).
The transition to adulthood for the person with diabetes can be fraught with poor glycemic
control and increasingly risky behaviour, with low motivation to manage diabetes (SparudLundin et al., 2010). For example, the young person with diabetes has been known to omit or
reduce insulin as a way to lose weight (Peveler, Fairburn, Boller, & Dunger, as cited in Kay et
al., 2009). This abdication of responsibility/risky behaviour can impact the person’s future
health negatively.
The time of transition for the person with type 1 diabetes from adolescence to adult
independence is similar in some ways to those without diabetes – a striving for autonomy with
some support from others (e.g. parents) (Karlsson et al., 2008; Samson, 2006). However, for the

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young person with diabetes the transition may have an exaggerated “hovering between parental
dependency and a willingness to make one’s own decisions” (Karlsson et al., 2008, p. 562).
Sparud-Lundin (2010) noted the increased potential for conflict that diabetes can precipitate, as
young adults and parents try to determine their roles; conflict that can have the outcome of
substandard control of diabetes. Kay et al. (2013) suggested that support from health care
providers could include teaching conflict resolution skills "within families or working with
partners or family members to aid their understanding of diabetes and its impact on the
individual" (p. 249). This could result in the person with diabetes feeling more understood and
supported. Young adults also expressed the desire for support from health providers rather than
authoritarian lectures. They suggested that health providers do not comprehend the daily grind
of diabetes (Sparud-Lundin et al., 2010).
Young adults in their third (20s) and fourth (30s) decade of life are often experiencing
career development, changes in occupation, the development of significant relationships,
transitioning to general adult health services, and considering parenthood, all while trying to
manage their diabetes (Balfe et al., 2013). This is the time that the person with diabetes is
becoming more future conscious and is beginning to lose that sense of adolescent invulnerability
(Balfe et al., 2013). Several emotions were described during this time period including
frustration and distress with diabetes management, guilt about not being able to manage
perfectly, and fear of future complications (Balfe et al., 2013; Kay et al., 2009). Frustration was
expressed about: not wanting to be mistaken for having type 2 diabetes and resenting the
inordinate amount of attention type 2 gets in terms of prevention, health care, and research
funding; the difficulty in getting access to new technology; and the lack of emotional support
provided by health professionals (Balfe et al., 2013). Guilt occurred when the person felt they

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did not have optimal control. Fear of the future revolved around complications, early death, and,
for women, the fear of being unable to conceive along with the fear of passing on diabetes (Kay
et al., 2009; Samson, 2006). The young adults in the Balfe et al. (2013) study
considered diabetes to be a limiting influence on their lives, either preventing them from
engaging fully in day-to-day activities such as work or forcing them to spend an
excessive amount of time on diabetes management. Interviewees said that they often
struggled to find an acceptable balance between their diabetes and their daily activities of
their ‘normal’ lives. (p. 6)
However, the young adults in the Balfe et al. (2013) study and the young women in the
Kay et al. (2013) study suggested that this time of life is characterized by a growing confidence
in their ability to manage the disease. Strategies to cope were described as: seeking knowledge;
denial, which could be adaptive or have negative consequences depending on the circumstances;
positive reframing such as focusing on the positives of having diabetes (e.g. increased empathy
for others); focusing on the tasks associated with managing diabetes; and downward comparisons
with those 'worse off' than them (Kay et al., 2009; Samson, 2006). Participants also indicated the
benefit of being able to discuss diabetes with another person with type 1 (Balfe et al., 2013; Kay
et al., 2009; Samson, 2006).
Adults with Type 1 Diabetes
Fewer life experience studies have been done with adults beyond the age of 30. Those
studies that could be found focused on specific components of diabetes such as: exploring the
lived experience of those who were considered expert diabetes managers (Paterson & Thorne,
2000); the concept of compliance or adherence (Ingadottir & Halldorsdottir, 2008); stigma
(Browne, Ventura, Mosely, & Speight, 2014); the psychological aspects of diabetes (Jones,

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Olsen, Perrild, & Willaing, 2016; Stuckey et al., 2014); the experience of the person with type 1
diabetes and health care (Richards, Morris, Booker, & Johnson, 2006); the experience of family
life in concert with type 1 diabetes or relationships when one of the couple has type 1 diabetes
(Rintala, Paavilainen, & Åstedt-Kurki, 2013; Trief, Sandberg, Dimmock, Forken, & Weinstock,
2013); and the relationship between the person and their disease (Watts, O'Hara, & Trigg, 2010).
In the Paterson and Thorne (2000) longitudinal descriptive study, 22 people with type 1
diabetes who were experts in diabetes management were interviewed. All 22 had diabetes for
more than 15 years (15-41 years) and were between the ages of 24 to 81 years. They theorized
from this study that expert status in diabetes management is a trajectory and can include the
stages of passive compliance, naive experimentation, rebellion, and active control. The stages
are not linear - they may occur in a different order or they may skip a stage altogether. However,
the participants indicated they may fluctuate in the amount of control they want, but once they
assume active control "you never go back to where you were before" (Paterson & Thorne, 2000,
p. 409).
Ingadottir and Haldorsdottir (2008) examined type 1 diabetes from the terms of
compliance, questioning whether the difference between evidence-based practice and the "lived
best" as chosen by the person should be labeled non-adherence or non-compliance (p. 606).
Eleven persons participated in the study; all but one had type 1 diabetes, and had a duration of
diabetes from 5 to 60 years. A key learning from the participants was that the person needs to
know oneself, respect the disease, and not let the disease dominate in order to successfully
manage. Ingadottir and Halldorsdottir (2008) indicated that mastering diabetes has four main
themes: knowledge, understanding, and experience (e.g. learning about diabetes and listening to
the body); fighting fear in the search for safety (e.g. fear of hypoglycemia, complications);

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dealing with conflicting desires (e.g. the desire to be normal); and autonomy (p. 610). The
complexity of diabetes management within a full life, of which diabetes is just a part, is
acknowledged in this study; it is not a simple manner of adherence or non-adherence. Ingadottir
and Halldorsdottir (2008) recognized that a 'one size fits all' management scheme may not be the
best for the patient. Richards, Morris, Booker, and Johnson (2006) using focus groups with
participants with type 1 diabetes found similar results - the participants wanted to be viewed as
individuals, seen as an expert in diabetes management, and treated non-judgmentally by health
professionals (Richards et al., 2006).
Browne, Ventura, Mosely, and Speight (2014) explored the specific issue of stigma with
a group of 27 adults, age 18 years and older, in Australia. The participants had a duration of type
1 diabetes of 5 to 43 years. These participants felt stigma from friends, media, family, and
healthcare providers. This stigma was described as being "characterized by blame, negative
social judgment, stereotyping, exclusion, rejection and discrimination" (Browne et al., 2014, p.
1). Interestingly, these participants also reflected the frustration about being confused with type
2 diabetes, similar to the Balfe et al. (2013) study with young adults. They felt that people
mistakenly believed that only children have type 1 diabetes, and adults have type 2 diabetes.
Type 1 diabetes was often characterized by others as the 'bad diabetes'. Again, they suggested
that the media and funding focused on type 2 (Browne et al., 2014). Participants also expressed
feelings of stigma on the job; the fear that to even disclose they have diabetes would affect their
job advancement. Others perceived stigma in trying to get a license or trying to get life
insurance. This stigma caused the participants to have feelings of "dejection, frustration, anger
and grief" (Browne et al., 2014, p. 6).

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The Diabetes, Attitudes, Wishes, and Needs (DAWN) study was a cross sectional survey
administered throughout numerous countries. The purpose was to determine attitudes, wishes,
and needs among people with diabetes and their health care providers. Diabetes related distress,
lack of self management behaviours, poor collaboration amongst health provider teams, and
barriers to the effective use of medication, especially insulin, were identified (Funnell, 2006).
Canada did not participate in the initial DAWN study but did participate in DAWN2. The
DAWN2 study was established as a large scale multi-national study to examine the
psychological aspects of diabetes (Stuckey et al., 2014). The participants were a combination of
adults with both type 1 (1368 or 16%) and type 2 (7228 or 84%). Two themes on the negative
aspect of diabetes and two themes on the positive were identified. The negative themes
identified have also been highlighted in other studies, such as the fear and worry about
hypoglycemia and complications (Balfe et al., 2013; Ingadottir & Halldorsdottir, 2008; Kay et
al., 2009; Stuckey et al., 2014). Discrimination at work was also identified as a negative
consequence of diabetes in the DAWN2 study, similar to the findings in the stigma study by
Browne et al. (2014). Two themes on adapting with diabetes were identified: "1) having a
positive outlook and sense of resilience in the midst of having diabetes and; 2) receiving
psychosocial support through caring and compassionate family, friends, health care
professionals, and other people with diabetes" (Stuckey et al., 2014, p. 2466).
In the Danish component of the DAWN2 study, over half of the adult participants had
type 1 diabetes with the duration of diabetes having a mean of 14.3 (S.D. 13.1) years (Jones et
al., 2016). Questionnaires were completed by participants and family members. From the
questionnaires the authors determined that:

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The burden of living with diabetes, whilst challenging for people with type 2 Diabetes,
seems to have a greater psychological impact on people with type 1 diabetes, who
reported higher levels of diabetes-related emotional distress, lower levels of emotional
well-being, lower quality of life, and higher negative impact of living with diabetes
compared to people with type 2. (p. 85)
In the Canadian cohort of persons with diabetes in the DAWN2 study, a startling 1 in 2
persons (approximately) reported significant diabetes distress (Vallis, Burns, Hollahan, Ross, &
Hahn, 2016). It was also noted that emotional burdens were higher for those with type 1
diabetes. However, those with type 1 diabetes scored higher in empowerment. The conclusion
of this paper suggested that the psychological challenges of diabetes "should be addressed within
diabetes management services" (Vallis et al., 2016, p. 234)
Rintala, Paavilainen, and Åstedt-Kurki (2013) interviewed 19 people with type 1 diabetes
for the purpose of exploring family life from the point of view of living with type 1 diabetes.
The study participants ranged in age from 28 to 65 years and had a duration of diabetes of 2 to 58
years. These participants indicated that "the balance between self management and the daily
routines of family was challenging" (Rintala et al., 2013, p. 89) and support from the family is
essential.
Trief, Sandberg, Dimmock, Forken, and Weinstock (2013) explored relationship
challenges experienced by people with type 1 diabetes and their partner. Sixteen adults aged 21
and over with a minimum duration of type 1 diabetes of two years agreed to participate. Again,
the fear of hypoglycemia was voiced by both the person with diabetes and their partner, as well
as future complications and the thought of having children and passing it on. The positive
focused on the support of the partner without diabetes and the improvements that technology has

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23

made in their life and relationship. However, some partners also felt that improved technology
(e.g. insulin pumps) actually caused them to be somewhat excluded from care that they were a
significant part of prior to the introduction of the technology (Trief et al., 2013). For example,
partners may not know how to program the insulin pump or address issues, causing them to
withdraw from care.
Watts, O'Hara, and Trigg (2010) examined the relationship between person and illness in
a study that used in-depth interviews with four participants with type 1 diabetes: David, aged 67,
diagnosed at 30; Sarah, aged 23, diagnosed at eight; 60-year old Mark diagnosed at 28; and Kate,
a 20-year old female diagnosed at six. Each of these interviews were analyzed separately in an
attempt to recognize the individuality of each person's journey. The authors use the discussion
as a way of describing diabetes as a relationship: David ignores diabetes, which is described as
David and his diabetes being estranged; Sarah seemed to want more control at some times, but
not at others, which was described as a dysfunctional relationship; Mark saw his relationship
with diabetes as a battle, he has been worn down by the conflict and sees death daily; Kate saw
the relationship as one of getting on together, however, she cautioned to not allow the
relationship with diabetes to take over your life. Watts, O'Hara, and Trigg (2010) thought the
strongest message from this study was that the concept of adherence underplays the context or
the 'rest of life issues' (p. 504); recognizing the need for attainment of personal goals may take
precedence over physical goals. Their parting comment is that "Type 1 diabetes is not just a
physical condition, but also a profoundly social and psychological one, and this leads us to
conclude that access to insulin should probably come hand-in-hand with access to personal,
emotional and psychological support" (Watts et al., 2010, p. 504).

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Summary of the Literature
This review of the literature about living with type 1 diabetes has revealed several
commonalities across the lifespan, including: seeking normalcy in the midst of dealing with a
chronic disease that demands constant vigilance; the need for support from others such as
teachers, parents, partners, friends, and health care providers; the recognition that health care
providers can be a source of discouragement as opposed to a source of support; the prevalence of
emotional feelings of fear, frustration, and guilt (i.e. fear of hypoglycemia, fear of future
complications; frustration with being mistaken for type 2 and that type 2 gets more attention;
frustration with access to technology; and guilt for not managing perfectly); and finally a feeling
of being stigmatized, whether, feeling different as a child that has to treat a hypoglycemic
incident in the middle of play or the adult that is afraid to tell an employer he/she has diabetes for
fear of losing their job. It is interesting that many of the feelings exist across the lifespan. This
study adds to this body of knowledge by learning if the same commonalities exist for the person
who has lived with diabetes for 4 decades or more. The next chapter will describe the research
design, methods and procedures used in this study.

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CHAPTER THREE: RESEARCH DESIGN, METHOD, AND PROCEDURES
This chapter describes the research process used to answer the purpose and questions
outlined in Chapter One. The chapter is divided in the following sections: study design,
sampling, data collection, data analysis, scientific quality, limitations, and ethical considerations.
Study Design - Interpretive Description
This study lent itself well to a qualitative approach, as the aim was to seek answers about
the "'what', 'how', or 'why'" of the phenomenon of living 40 years or more with type 1 diabetes
(Green & Thorogood, 2009, p. 45). The phenomenon was illuminated through the personal
stories of the participants. Through the method of interpretive description, the stories were
described and then interpreted into something meaningful for clinical practice. Thorne et al.
(2004) suggests that "what is known, whether by virtue of formal research or of clinical
interpretation, should be considered foundational forestructure to a new inquiry" (p. 173). Thus,
interpretation was aided by the analytic framework of the exiting knowledge (literature review)
and the clinical and personal knowledge of the researcher; a diabetes educator who also has a
husband who has lived with type 1 diabetes for 55 years. Interpretive description provides a
method of qualitative inquiry that borrows from the areas of phenomenology, ethnography, and
grounded theory. The method does not prescribe specific steps but rather provides guidance on
what to avoid when working out a design logic (Thorne, 2016, p. 41). The intention of using this
method was to develop meaningful interpretations of the phenomena which could be applied
within the practice of nursing. It is hoped that this interpretive description will pass
"the 'thoughtful clinicians test,' in which those that have expert knowledge of the
phenomenon in a particular way find that the claims are plausible and confirmatory of

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'clinical hunches' at the same time as they illuminate new relationships and
understandings" (Thorne, Reimer-Kirkham, & O'Flynn-Magee, 2004, p. 8).
Sample/Data Collection
Data saturation refers to repetitive patterns in data or receiving redundant information
leading to the belief that the research is complete because no new data is being revealed (Polit &
Beck, 2017). Thorne (2016) suggests saturation is not possible when exploring a clinical
phenomenon; that there is the possibility of "infinite experiential variation" (p. 107). Rather, she
suggests making a case for setting "arbitrary sample limits" (p. 108). For this study, the
researcher sought a sample size of six to ten participants. Six participants were the minimum
number of interviews that would allow for common aspects to be discerned across them and to
provide an opportunity for "meaningful clinical description" (Thorne, 2016, p. 105). As there are
no apparent statistics available outlining the number of people in who have had type 1 diabetes
for 40 years or more, it was difficult to determine the number of participants available. Six to ten
participants seemed to be a practical number; however, there was no guarantee the minimum
would be reached. In the end eight participants agreed to be included in the study. Table 1
provides some information about the demographics of the participants.

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Table 1
Participant Demographics in the Living Well with Long-Term Type 1 Diabetes Study

Age

Sex

50
48
62
50
52
62
63
56

female
male
female
male
male
male
female
male

Age of
diagnosis
(years)
10
8
19
8
10
13
11
3

Duration of
diabetes
(years)
40
40
42
42
42
49
51
52

Employed


retired


retired
retired


Data collection occurred through the use of semi-structured, individual interviews with
eight people who had lived with diabetes for 40 years or more. A convenience sample of
participants were recruited through: the placing of a poster in strategic places (Appendix B), such
as doctors clinics and pharmacies; letters of invitation distributed to appropriate clients (those
having had type 1 diabetes for 40 years or longer) by a Nurse Manager of a Diabetes Research
Group (Appendix C); and an email invitation (Appendix D) sent by the Regional Executive
Director of the Canadian Diabetes Association. A snowball approach was also used in that
participants or others expressing interest in the project were offered letters of recruitment to
distribute to acquaintances who met the criteria. Participants then contacted the researcher by
phone or email.
Prior to beginning the interviews, the purpose of the study and the research questions
were reviewed with the participants. The consent form was reviewed with the participant
emphasizing the assurance of confidentiality and the right to withdraw at any time until the data
had been combined and it is no longer possible to identify individual responses (see Appendix
G).

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Each participant was interviewed in-person for one hour and 15 minutes to one hour and
30 minutes in a location that was mutually agreed upon. The list of interview questions and
prompts are provided in Appendix E. A debriefing session occurred immediately following each
interview (Appendix F). All interviews were audio-recorded using a digital recording device and
were transcribed verbatim. The researcher transcribed the first 2 interviews and a transcriptionist
was hired to transcribe the following 6 interviews. The audio recording was deleted following
transcription and the transcribed data was stored on a password protected computer.
Field notes and reflexive journaling were completed immediately following each
interview. Field notes allowed for the researcher to outline observations that would not be
readily apparent through the interview transcript such as what the researcher has "heard, seen,
thought or experienced" (Streubert & Rinaldi Carpenter, 2011, p. 42). Also, a reflexive journal
was kept as a way to identify (and bracket) potential researcher bias and related influence on the
data collection and analysis. Jootun, McGhee, and Marland (2009) suggest, "reflecting on the
process of one’s research and trying to understand how one’s own values and views may
influence findings adds credibility to the research" (p. 42). As part of the reflexive journal the
researcher tracked an internal dialogue on "‘what I know’ and ‘how I know it’" (Jootun,
McGhee, & Marland, 2009 p. 42).
Data Analysis
Although interpretive description (ID) does not offer a 'cookbook approach' in that there
are "very few explicit or prescriptive guidelines", there are some common steps for analyzing
data (Thorne, 2016, p. 41). Thorne suggests that a sequence of steps to draw upon may be
useful, but to recognize that the steps inform rather than prescribe analysis (Thorne, 2016, p.
111). ID uses concurrent data collection and analysis. As a result, data analysis began after

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transcription of the first interview. Only slight modifications to the interview questions were
made following the first interview, analysis of the related transcript, and in consultation with the
thesis supervisor. Losses related to diabetes were identified right from the first interview. Thus
the following prompt was added after the question on challenges related to diabetes: Has
diabetes stolen anything from your life?
Transcribed interviews were read and re-read several times, allowing the researcher to
become immersed in the data and to begin the coding process. A preliminary code book was
developed in consultation with the supervisory committee. Once the code book was refined,
the remaining transcripts were coded. Analysis of the data was accomplished using an
iterative approach for categories that have similar patterns, themes or meanings. The software
program NVivo™ was used to assist in organizing the data. The process of data analysis
occurred over several months and in consultation with the Supervisory Committee. Four
main themes emerged, which are described in detail in Chapter Four.
Scientific Quality
Rigor is often expressed as trustworthiness in qualitative research, which refers to the
confidence the researchers can have in their data (Polit & Beck, 2017). Lincoln and Guba's
framework (as cited in Polit & Beck, 2017, pp. 559-560) was used to determine rigour. The four
criteria in this framework are credibility, dependability, confirmability, and transferability.
Credibility
Several methods were employed to ensure credibility. The supervisors for the project
reviewed the coding and were involved through discussions of theme development and other
aspects of the analysis. The reflexive journal assisted with bracketing, which is described as
"putting aside one's own beliefs, not making judgments about what one has observed or heard,

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and remaining open to data as they are revealed" (Streubert & Rinaldi Carpenter, 2011, p. 27).
This was an important consideration as the researcher is both a Diabetes Educator and the spouse
of someone with long term diabetes. As such, there was potential that the researcher could
impose her own feelings into the study. By bracketing using a reflexive journal, the researcher
identified personal experiences that could influence or colour data collection or analysis
(LoBiondo-Wood & Haber, 2005).
The researcher also promoted credibility by member checking the final themes with the
participants. All participants were given an opportunity to review the themes. Four participants
chose to review the themes and provide feedback. Thick description with the inclusion of
interviewee quotes was also incorporated into the Findings Chapter thus promoting credibility.
The final measure of credibility is visible in the Discussions Chapter when the findings are
discussed in light of other published research (Shenton, 2004).
Dependability
A research log was maintained during the duration of the research. The research log
outlined the activities that occurred and the methodological decisions made throughout the
project. The presence of a research log provides a map of the processes of the study.
Confirmability
An audit trail was maintained to support confirmability. The audit trail included how
decisions were made such as how the data was transformed into codes and then into themes
(Letts et al., 2007). NVivo™ was used to organize data (labeling text, coding and retrieving
data), but did not replace reading, thinking about, and analyzing data (Bringer, Johnston, &
Brackenridge, 2004).

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Transferability
Due to the small sample size it is difficult to determine whether the study results are
transferrable. However, the participants are described in terms of demographics which may
enhance transferability (Letts et al., 2007).
Authenticity
Authenticity was achieved by using descriptive wording in the final report that mirrors
the participants experience as explained to the researcher. Field notes during the study helped
the researcher maintain authenticity as she tracked non-verbal cues, and setting within the
interview.
Limitations
The small sample size limits the ability of this study to be transferrable to other similar
populations. All participants were Caucasian, knowledgeable about type 1 diabetes, and with the
exception of one participant, were quite connected with the health care system (e.g. identified a
health care team that they accessed). None of the participants had any significant diabetes
complications. As seven of the eight participants came from referral through the CDA or
through the Nurse Manager of a Research Unit, it could be argued that this group represented
those people with type 1 diabetes who stay connected and supported in their care. It is difficult
to know if this is representative of most people who have had type 1 diabetes for 40 years or
more.
Ethical Considerations
Ethical approval was received through the Trinity Western University Research Ethics
Board. A consent form was developed and signed by the participants with a copy provided to the
participant and a copy for the researcher’s records (Appendix G). As diabetes is a chronic

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disease and predisposes the person to many complications such as blindness, amputations, and
heart disease, there was a potential for participants to be economically marginalized due to
disability and/or institutionalized. None of the participants appeared to have this as an issue, but
all meetings were at a mutually decided on location to support accessibility for the participant.
All participants freely chose to be interviewed. The researcher did not have any prior
contact with the participants regarding this research opportunity. Due to the type 1 diabetes
community being small, and the researcher being a diabetes educator in the past, as well as a
volunteer for the CDA, the researcher was acquainted with or knew of the person through
mutually acquaintances for 6 of the 8 participants. However, the researcher had not been an
educator for any of the participants. The participants voluntarily contacted the researcher.
Although the researcher did not ask the participants specifically where they had learned about the
project, it was the researchers impression that most either heard of it through CDA or through the
Nurse Manager at the Diabetes Research Unit. Only one participant was referred through a
mutual acquaintance of the researcher.
Confidentiality of the participants was maintained by not linking names to the
information presented. The participants are identified by numbers which are used throughout the
transcripts and in this thesis. The researcher is the only link between the numbers and the names
of the participants. The data is stored on a password protected computer and printed transcripts
are in a locked cabinet. Audio-recordings were destroyed after transcription. The data will be
kept in a secure place for 5 years, after which time it will be destroyed. Access to the data will
be restricted to this researcher and the supervisory committee.

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Chapter Summary
Interpretive description was explicitly developed for nursing. Thorne et al. (1997)
recognized that the traditional qualitative methods nurses were using were reflective of
philosophies that were different that nursing. Interpretive description provided a way to learn
from and use the previous qualitative methods but also to depart from them where necessary and
not be accused of “sacrificing the theoretical or methodological integrity” (p. 169). This method
worked well for discovering the "'what', 'how', or 'why'" of the phenomenon of living 40 years or
more with type 1 diabetes (Green & Thorogood, 2009, p. 45). Through the scaffolding or lens of
the literature review and the expertise of the researcher, the information provided by the
participants illuminated interpretive reflections that can be used and verified by others in the
diabetes field. However, the method also provided direction for checks and balances to assist in
maintaining the scientific quality such as keeping a reflexive journal, so that the professional and
personal knowledge of the researcher did not overshadow or lead to interpretations that were
coloured by the researcher’s experience. The researcher is part of the process and thus cannot
remove all of her bias’s completely, however, through the reflexive journal, she can make her
subjectivity apparent to the reader.
As with all research, there are limitations. This study provides a glimpse into living 40
plus years with type 1 diabetes for eight participants who are fairly homogenous, in that they are
all Caucasian, all except one have a health care team, and none are experiencing significant
diabetes complications. However, they have lived with the disease for 40 plus years and their
thoughts and impressions are valuable. It is anticipated that nurses working with those with type
1 diabetes will find the interpretation of their experiences helpful to their practice. The next
chapter will describe the findings from these participant interviews.

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CHAPTER FOUR: FINDINGS
Introduction
The purpose of this study was to learn about living well with type 1 diabetes from
participants who had lived long term with the disease. Tension between the many aspects of
caring for diabetes and living a full life were noted. Participants described living between two
dichotomies – one which facilitated living well with diabetes and the other constantly
challenging living well with diabetes. Table 2 outlines the themes and sub-themes that were
identified through analysis.
Table 2
Themes and Sub-themes in the Living Well with Long-Term Type 1 Diabetes Study
Themes

Sub-themes

Accommodating and Battling the Disease

Routine
Losses and fears
Unrelenting

Convenience and Constraint of Technology
and Treatment

Technology/treatment as convenience
Technology/treatment as task master

Self Reliance and Reliance on Others

Family support
Medical management and self management
System dependence

External and Personal Knowledge

Knowledge seeking
Lack of knowledge of others

These themes are further described and interpreted in the following paragraphs. An
initial section sets the stage with descriptions about the participants’ introduction to diabetes
(diagnosis). Direct quotes are used to contextualize themes. These exemplars are used
throughout this Findings chapter to offer “illumination of commonalities and elaboration of some
of the kinds of variations” in the individual stories (Thorne, 2016, p. 207). Showing the common

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and the particular within the study stays true to the method of interpretive description,
recognizing the value of individual responses along with the shared experiences.
Diagnosis
Um, upon admission to hospital, my blood sugar was 32 and immediately,
you know, my life changed forever...(#2)
All of the diabetes stories began with diagnosis. Although diagnosis was never described
as traumatic, it was described as a significant and memorable event in each of the interviewees’
lives. Even the participant diagnosed at 3 years of age spoke about feeling very ill, how
frightened his parents were because they initially thought he had leukemia, and about the
experience of having his first needle. Most can remember what they were doing at the time of
diagnosis and the time of year.
Over 40 years ago it was common practice to admit the person newly diagnosed with
type 1 diabetes to the hospital for treatment and this was the collective tale from the
interviewees. The participant diagnosed as a young adult found this difficult as she had just
started working and thus was not paid for her time away from her job. Another described this
initial hospitalization as his first time being away from home as a child. Only one participant
described being diagnosed without being admitted to hospital and his was a unique story. His
brother, at age 11, was showing the classic signs of diabetes - thirst, frequency, weight loss - and
was subsequently diagnosed with diabetes. Upon his brother’s diagnosis, three of his siblings
and himself were taken for a glucose tolerance test and it was determined the participant was
hyperglycemic. Interestingly, he was placed on a 'diabetic diet' for several months before
starting insulin. Thus, he was diagnosed pre-symptoms and was never hospitalized.

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Diagnosis began the diabetes journey. As the stories continued it became clear that the
participants’ relationship with diabetes varied from compatible agreement, to conflict, to an
uneasy truce. As such, diabetes seized a very real role in each participant’s life.
Theme 1: Accommodating and Battling the Disease
Each participant described diabetes as integrated into their lives, but also shared about
times when they railed against it, clearly elaborating on the tension of living with type 1 diabetes
long term. While the daily activities of managing diabetes became routine, those very activities,
along with the disease itself, led to fears and losses in their lives. As well, the participants shared
that there are no holidays from this disease; it is unrelenting.
1.1 Routine
...practice as much as you can taking good care of yourself, whatever
the circumstances are, always make sure that your diabetes is in
good control. Whatever, whether things are going well or not so well for you,
...this is just one of those constant things like eating and going to the bathroom
Advice to the newly diagnosed child (#5)
After 40 years, diabetes was described as a routine part of life and, as such, needed to be
accommodated into life in the same way as other daily activities. One participant suggested, "I
just look at it as a sort of routine...it’s, it’s one of those uncontrollable things, so I don’t waste
any emotion on it, just move on" (#5).
A positive mindset was described as a facilitator for integrating diabetes into the routine
of life. This was described as a 'can-do' attitude; not hiding the disease, not flaunting it, but
making the best of it. Participants felt they were fortunate that diabetes was their disability and
not another disease, "...of all the disabilities I could’ve had, (with) diabetes you’re guaranteed

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three square meals a day, you know you gotta look at those things right?" (#3). Downward
comparison to other conditions was also not uncommon, "Because, um, ohh, I hate to say it this
way, I sometimes think there's a lot worse people out there" (#2). Another participant shared he
never has a bad day because he recognizes those who are ‘worse than him’. Two of the participants
felt proud of the fact that they had received perfect attendance awards at their job and saw that as
evidence of dealing well with diabetes.
Living in balance or practicing moderation was described as an attitude for successful
diabetes management. For example, "living well is to not let it get...to you too much and yet not
ignore it. So finding the balance" (#6), and from another participant, "...always trying to be in
balance, moderation, you know, this is sort of an oxymoron but extreme moderation, you know.
Don’t over expend in too many areas at once" (#3).
In concert with a positive attitude, several participants indicated that living with diabetes
had actually benefitted them in life. Some shared that diabetes influenced their career choice or
the knowledge and skills gained through their journey with diabetes helped them advance within
their chosen career. Diabetes was credited with helping the child with diabetes to think logically
and grow up fast. Many of the participants indicated that diabetes was instrumental in causing
them to live a healthier lifestyle. One participant stated it this way, "diabetes has helped me...has
provided the impetus for me for try to maintain myself physically, to stay in good shape, and not
abuse my body" (#5), and another suggested,
I’m probably far healthier than I would have been if I didn’t have it. I eat really healthy,
my whole grains, my fresh fruits and veggies. I am far more aware of what's going into
my mouth than people around me are (#4).

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The ability of each participant to build diabetes into the fabric of their lives speaks to their
success in living well with type 1 diabetes for 40 plus years. Wrapping the care and management
of diabetes within a positive outlook on life was shared as a secret to success. However, the years
were not without losses and fears.
1.2 Losses and Fears
if you can live through your adolescence, the rest gets easier
Advice to child with diabetes (#3)
One of the first losses identified by the participants was an early and ongoing awareness
of mortality. One interviewee felt it was impossible to get away from recognition of his own
mortality, due to negative media messaging, especially by diabetes non-profit organizations
when soliciting donations,
All my life I’m saying you’re going to have a heart attack, you’re going to die from a
heart attack, you’re going to ...be blind, you’re going to lose your toes, and all that sort of
stuff, so again, I have a very positive outlook but that’s being, you’re being bombarded
on a regular basis (#8).
One spoke about living dangerously as an adolescent because he believed he would not live past
40 years of age. Another shared a poignant story from his childhood, unintentionally hearing
about his limited lifespan,
...I was at an appointment with my mom with Dr. M and he was talking to somebody in
the hallway and I remember him saying with type 1 diabetes his prognosis is probably
about forty years. I was, I was like ten, nine, I’m thinking you know that’s not a very
long life somehow (#7).
One of the women spoke about people using threats as a way to keep her focused on
managing her diabetes, "I was warned by people that I was going to be blind by the time I was

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39

twenty-five. I would be dead by the time I was thirty and I would never have children" (#4).
Mortality was also very real to two of the participants who had lost parents early in their lives as
a result of diabetes.
Each of the ages and stages of life came with their own losses and fears related to living
with diabetes. The first memories were closely aligned with accommodating daily injections,
which were frequently described as a psychological hurdle. In the early years, the needles were
glass syringes that needed to be boiled and sharpened. Dislike of needles or needle phobia was
described,"... I was petrified and I seriously mean petrified of needles... when I started with the
shots they almost had to hold me down" (#6). One spoke about hiding under the bed when a
nurse came to do his blood sugar. Another described having "nightmares about poking myself,
because I used to be a... skinny little runt (#3). He switched to the pump later in life to reduce
the number of times he had to give a needle. After 40 plus years of type 1 diabetes, participants
expressed that they still "hate needles" (#7).
Childhood events such as Halloween, birthday parties, and sleepovers were described as
limited or non-existent due to diabetes. Some people chose not to drink alcohol because of
diabetes, and one shared this limited her social activities as a young adult. Two participants
spoke about diabetes limiting involvement in sports in school, "I used to be a great sprinter, but
every time I’d run a sprint I’d get a hypoglycemic… immediately afterwards...So I decided, and I
was very good, and I decided I had to quit" (#3).
As children, several participants indicated they had felt stigma related to diabetes. Two
participants spoke about being treated badly as children because they had diabetes, "Well, kids
used to laugh at me. Halloween or something you'd bring a can of apple juice or something
instead...no such thing as diet drinks" (#1); and "I can remember clearly, you know, my school at

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Valentine’s Day, everybody got a valentines, everybody, I got nothing. Christmas time, you
know cards are given out from all the students, nothing" (#7). This participant went on to say
that he can meet classmates as an adult today and one of the first comments is that he is 'that
fellow with the disease'.
Other incidences of stigma included not being invited to birthday parties, being accused
of being teacher's pet when a teacher purchased a drink for the participant when she had a low
blood sugar, being scolded by a flight attendant for taking insulin at her seat, and being told ‘you
can't do that’ or ‘you can't have that’. One participant joked that he was going to write a book
titled "You Can't Do This, You're Diabetic" (#5).
Even those participants who stated they had not experienced stigma related stories that
could be construed as stigma. For example: not being allowed to take sick days from work to see
her specialist but having to take vacation days; being patted down at the airport because the
pump can't go through the scanner, and having an airport official refuse to touch the pump; and
being 'observed' carefully by a policeman when taking insulin in a restaurant.
One participant related, "The boyfriend I had in high school... his mother warned him not
to get serious with me because I would never be able to have children and I would be dead by the
time I was thirty" (#4). That participant has gone on to marry and have two children. She stated
she was at a social function with those same parents many years later and that she wanted to go
up to them and say "Boo."
Adolescence was commonly described as a difficult time for diabetes care and
management. Not only were there hormonal changes and growth spurts that played havoc with
blood sugars, but this was also described as the time when you are trying to assert your
independence and move somewhat away from parental control. As described by one participant,

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who was diagnosed in his teens, "I’m a fairly assertive person and … (diabetes) didn’t help me
break free from, you know, constraints around me, become more independent. So it inhibited
my independence considerably" (#3). In the same vein, the participant who was diagnosed at 3
years of age wondered if perhaps he adjusted better to the disease than those who had to learn to
adjust at an older age.
Adolescence is also the time that teens begin to experiment with alcohol and drugs. As
one participant shared:
...as an adolescent you want to, you know, you want to do stuff, you want to become
intoxicated, you want to smoke dope, all this stuff is problematic. ...So you have to learn
how to do that and still maintain, still stay alive and so it’s very difficult when you’re an
adolescent. So the discovery was tough and then the adolescent years were very, very
tough because, you know, (you are) just happy to be alive basically (#3).
Participants described times of rebellion in terms of diabetes management. One
participant talked about getting "mad" at her parents and getting back at them by eating candy.
Some made up the records they took to the doctor. For example,
When I was first diagnosed, we were testing our urine with drops of urine and drops of
water in a test tube and putting a pill in there, so when you'd go to diabetes camp you
either use someone else’s urine or you add more water just to get the colour change
right... we were only cheating ourselves (#8).
Another participant spoke about faking his sugar logs and having a doctor call him on it:
So he says to me one day, this might get a little bit graphic just so you know, there was a
swear word. I remember I was in his office, and he says ‘so how you doing?’ I said ‘I’m
doing good’ he goes ‘yeah, the sugars good?’ well I’m like ‘yeah’. He says your logs

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look really good but your A1C is SHIT. And I says ‘I’m stunned’ and he says 'listen to
me if you want to effing kill yourself, don’t waste your time doing it then, just do it then’
(#7).
He described this incident as his wake up call, the turning point when he began to look after his
diabetes.
As a young adult, several life experiences interfered with living well with diabetes. The
women described pregnancy as an age and stage when diabetes took priority in their lives.
Unlike adolescence though, this was the time when the women took charge, putting all their
efforts into managing the disease well. This was the highest motivation in their lives, to put the
life of their unborn child first and foremost, which meant having diabetes take centre stage. One
participant described planning the conception and being "vigilant" and "almost scientific." Good
diabetes control during pregnancy was paramount to these women. One described testing her
blood sugars, on average eight times a day and another stated, "you’re so concerned to be as
perfect as you can possibly be. And I probably was the most, the best during those two
pregnancies" (#6).
However, losses were expressed around having children as well. One participant shared
he did not have children because he did not want to pass on diabetes. Another had a tubal
ligation after having one child. She had experienced a stillbirth prior to the live birth and felt
blessed to have one child. However, later on she wished she could have had a baby with her
second husband. She felt diabetes had influenced her decision to have a tubal ligation.
The immediacy of life choices as a young adult, with career, education, and young
family, also impacted the management of diabetes. One participant shared that when his children

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were young, he was going to school and had a full time job. He described the interruptions in
sleep and the general busyness of life as a loss to good diabetes control.
Although some participants felt diabetes had actually benefited their career, others felt it
was an impediment to career choices,
You know, it has hindered me a lot in my life's work...as you can see I play piano and I
used to play guitar, and that kinda thing. And, I'm decent at it. I wanted to travel and
make money playing different places. But, most of that's in the U.S...And I couldn't, you
know, I couldn't go there because they didn't have any health care (#1).
Several participants identified travel as something that diabetes has limited. Travel
imposes a lot of considerations such as: what is available medically? do I need to worry about
keeping my insulin cold? and do I want to travel alone and juggle all of the diabetes
management? One participant suggested he may have been a more adventurous traveler without
diabetes.
The aging adult was also not immune to losses and fears related to diabetes management.
Participants shared they now are dealing with further chronic diseases such as arthritis, which
causes them to not be as active, which in turn impacts diabetes management. As well, normal
aging processes such as menopause make the balancing of blood sugars less achievable.
As noted, each stage of life was impacted by the losses and fears related to having
diabetes. Many of those losses and fears were related to diabetes management. All participants
were aware of the importance of managing the disease. Sometimes the burden of management
itself led to choices that represented losses, such as career, travel and having children.
Sometimes the interference of other aspects of life led to losses in control of the diabetes, such as
the busyness of life and the aging process. Sometimes there was outright rebellion against the

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disease such as when some adolescents chose to fabricate their results. However, in the midst of
the losses and fears, it was very apparent that diabetes itself, never goes away, is a constant in
their life, and could be described as unrelenting.
1.3 Unrelenting
What would you tell them? I guess there would be that part about coming to that realization that
it is gonna be there for the rest of your life...
Advice to a newly diagnosed child (#5)
The 24/7 nature of diabetes is unrelenting; there are no holidays from the disease. One
participant shared her frustration this way, "just this week while we're here on holidays I said to
my husband I’m kind of resentful ... of the pump, I have to go it’s empty, I have to go change it,
like I’m sick of it" (#6). She went on to describe an experiment in relinquishing control for a bit
of a ‘holiday’. She had gone to the doctor one day and said she wanted to quit caring for
diabetes. The doctor said he wished he could give her a holiday. He suggested that she let
someone else make the decisions for one day. So, she said to her husband, 'you make the
decisions today - you keep track of my blood sugars, you carb count, and you determine my
insulin'. He said sure, he thought he could do that. After breakfast, she asked, what did I have
for breakfast? What was my blood sugar? How much insulin do I take? He shrugged his
shoulders, and she realized that he hadn't been paying attention. She could not get a holiday
from diabetes.
Although diabetes was incorporated into life for the participants, even the routine was
challenging. For example, when going out for supper at a friend's house, the person with type 1
diabetes has to remember to take fast acting sugar, a blood glucose meter and strips, insulin, an
insulin delivery device, and make sure the glucose meter is charged. When they get to the house

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they have to consider how long it will be before they eat, and whether they need anything extra
while they wait. If they have an alcoholic drink, they have to think about how that will impact
their sugars. When supper comes, they have to consider what they will be eating and balance it
with their insulin delivery. They have to know if there will be dessert as they need to take all of
this into consideration when coping with the duties of living with diabetes. One participant
described it like this:
I carry dex tabs with me all the time, try to, you know? It’s that extra, there’s always that
extra bit of stuff you have to remember, you know, so my wife is very patient because I
always take the longest to get out the door because I’ve got to grab all my stuff, you
know...It’s not like just grabbing my wallet and my cell phone and go, I grab my wallet
and my cell phone, do I need my meter, is my (meter) charged...And where are we going,
does the insulin need to remain cold, do I need to bring something along to try and keep it
a little cooler...Uh, blood glucose meter, do I have enough strips, uh, you know (#5).
The unrelenting responsibility of diabetes is linked closely to trying to manage
fluctuating blood sugars. One participant clearly identified diabetes as an adversary,
I want you to know it was not an easy fight that I fight every day, there is no day that I
wake up and think that I’ll give insulin tomorrow or I’ll check sugars tomorrow, every
hour of every day or every minute of every day I’m concerned thinking about what my
sugars are at, if I’m bouncing, when the next low is going to be or when the next high is
going to be (#7).
Daily activities have to be accounted for and if there are adjustments in routine, the
person with diabetes has to consider how that affects them. One participant spoke about riding
on the golf cart and waiting until the third hole to start golfing, as his blood sugar was low. The

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same participant spoke about the challenge of losing weight. He was trying to lose weight but he
had several nights with lows. He had to get up and treat with food, thus sabotaging his weight
loss plans.
All participants discussed the difficulty in maintaining stable blood sugars. In fact,
several commented that stable blood sugars were an impossibility for the person with type 1
diabetes, "I have had low sugar before, you know, we all, every diabetic does...If they say they
don't they're lying to you" (#1); "'Cause I mean, at the end of the day, there is no
perfect...formula for smooth control all the time, you're gonna end up bouncing" (#2); and "it’s
funny to hear people, oh I’m a diabetic I have no problems, I’m like well then you’re lucky,
you’re lying, but you’re lucky" (#7).
Fluctuating blood sugars affected all aspects of life. Participants described high blood
sugars as affecting both their concentration and their emotions. One participant described it to
his daughter as a hormone, similar to when she has her menstrual cycle - when the hormone
insulin is not leveling the blood sugars, emotions can cycle out of control.
you know, women have that time of the month where emotions are up and down, flaring,
and you go from, you know, calm to cry-baby in like ten minutes. And that’s me every
day because insulin’s a hormone. So my sugars are out of whack and it does happen, I
just came out of a two-day low blood sugar where, you know, ya you get emotional, you
get sad, you get depressed, you get angry, you get frustrated, you yell at people, it’s really
a mixed bag, ...because my hormones are out of whack every day of the week, there’s no
one day where it’s like okay, yeah, it’s good let’s go (#7).
Accommodations for fluctuating blood sugars include testing often, modifying activities,
telling people about the condition, and having fast acting sugar on hand at all times. But even the

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best-laid plans can go awry. One participant had juice in the staff room fridge for use when he
had a low blood sugar and another staffer drank it, resulting in him not having a fast acting sugar
available for his low blood sugar. When one participant was a teen, another teen played a trick
on him and switched locks on his locker, leading to an emergency situation when the teen with
diabetes could not get into the locker for his fast acting sugar. Another talked about cycling and
forgetting his fast acting sugar. He had a low blood sugar on the trail and had to approach
several hikers and ask for help. This constant tension between independence and
accommodating the disease is troubling for the participants. One participant described it as
embarrassing, "I have a low sugar, you feel embarrassed, you know, if I have a high sugar I feel
embarrassed, because you’re not the same person" (#7).
Traumatic hypoglycemic events were not uncommon in this group. One participant took
insulin as was his habit in the evening, even though his blood sugar was low. His wife had to
call the ambulance. He was told afterwards that he was minutes away from death. The
participant that was diagnosed as a young adult remembers her first hypoglycemic event in the
hospital. She had a pass from the hospital to go to an event on New Year’s Eve and before she
went, she experienced her first low blood sugar. She shared,
'cause we had tickets to go somewhere and, um, I was allowed to go out for 2 hours, and I
had the worst low ever. And it was my first experience with an extreme low. And I just
bawled, because, I just thought, oh, ya, 'cause I had never had a low. So, I did not go out,
I did not go out that day (#2).
The same participant lost her license as a result of hypoglycemia - shearing off a fire
hydrant during the incident. She states she never drives now without testing her blood sugar
first, "I will never get behind the wheel without poking (testing blood sugar). Ever! I mean,

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even if it's just and hour and a half between the time that I've tested, had breakfast, showered,
now I'm going to drive? I'll poke" (#2).
Fluctuating blood sugars have had an impact on the job for a number of the participants.
One stated that if he is working with a customer, he cannot walk away to do his blood sugar.
Another spoke about just being promoted to team leader and having to cancel a meeting as she
was having a low blood sugar and was not capable of leading the meeting. A third spoke about
having to tell a supervisor during an interview for a new job that she was having a low blood
sugar and was not at her best to continue the interview.
All spoke about the factors in everyday life that affect blood sugars negatively such as
stress, common illnesses, increased activity, and hot weather. One participant described a
traumatic low blood sugar following activity on a hot day in vivid detail:
Warm summer day about three years ago, I had hula hooped in the park that morning.
After lunch I am going to go (shopping)...I’m in the car and I’m thinking yeah it’s really
hot out but I’m sweating...I think I might be low. So I check my blood sugar and sure
enough I am low so I call him (husband) and I say I just checked my blood sugar and I’m
low so I’m not driving for about twenty minutes. I’m just sitting here. We use the stalker
app, the find my iphone app so we can find where each other is if we wanted to check, so
I knew, I figured he might be looking at me and wondering what the heck I’m doing
sitting in a parking lot. So ‘I’m just calling to let you know I’m going to be sitting here
for a little while’ ‘okay, alright, thanks, you know what, just give me a call before you’re
ready to start driving again’, I said ‘maybe I’ll go hang at ...(store) for a while and look at
the animals, it’s air-conditioned in there’ and I didn’t want to start my car. So, anyways I
call him again, okay, now I’m going to head over to (grocery store), ‘okay’. I get to

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(store), there’s only a few things I need to pick up…, I get in there and I’m just about
done my grocery shopping and I start to sweat like a teamster and I’m thinking holy crap,
my blood sugar is dropping. Oh I’ll just check out, get my groceries into my car and then
I’ll treat, then I’ll wait a little while and then I’ll drive home. Well I got my groceries
into my car, took the cart to the cart realm and I’m trying to extract now all carts, I don’t
know why. The (store) park person stops and asks me what I’m trying to do, what I’m
trying to accomplish, excuse me. And I looked at him, then I just slurred at him, I
couldn’t speak. ...I remember putting my head in my hands and he says to me, miss can
you tell me where you are? And I look up at the great big (store) sign and I say (store)
but it’s really slurred. Miss, do you have a car here? And all I do is turn and point at my
car. I point at my car. There’s another shopper approaching with a small child. He stops
her, he asks if she has a cell phone and asks her to call 911, that part I don’t remember,
my husband collected that data later... Now my husband is watching me on the stalker
app on the iphone and noticed that I had been in the parking lot for ten minutes. He’s
been watching me not move so when I turn to point to my car I see his vehicle pull up
and I recognize the grill. And I started to cry because I knew that...I was so low now that
I was not able to treat myself, okay. So (husband) gets me into the vehicle and gives me
about five dextrose and he gets me sitting there and he went back then to the cart person
and the woman with her small child. And so he went and explained that I am diabetic,
and I was having a hypoglycemic event, and that thank you so much for looking after her
and intervening (#4).
She then went on to describe how she felt after that experience through a discussion with her
son:

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...I am bitter when I walk into the house, so angry that this has happened and that this
happened in public and that people are going to think I’m an idiot and that I’m not
capable and dad’s going to think that I can’t be unattended ever now. I’m talking to (son)
now; ‘Mom, mom, mom, no, stop beating yourself up, no mom it’s not like that’ (#4).
This episode depicts how difficult it is for the person with diabetes to experience the lack of
control during a hypoglycemia event that cannot be managed without help.
The participants clearly described diabetes as a constant task master. The words battle
and fight were used, and the sneak attacks of severe hypoglycemic events were described in
detail. Although the activities of managing diabetes are routine, they also require constant
diligence. Advances in technology and treatment over the years have assisted the person with
type 1 diabetes in being armed for the battle. However, as can be seen in the next section,
technology can be both a support and a frustration.
Theme 2: Convenience and Constraint of Technology and Treatment
Forty years of advances in technology and treatment of type 1 diabetes were discussed by
the participants. All but one remembers reusable glass syringes. All remember being on one
injection a day. All remember checking urine for sugar. The amount of change in the treatment
and surveillance of type 1 diabetes in the past 40 years has been dramatic. Although the treatment
and technology changes were welcomed and embraced by the participants, they also created
another layer of expectations for the person with type 1 diabetes.
2.1 Technology/Treatment as Convenience
Get on an insulin pump ASAP and learn carb counting.
Advice to a newly diagnosed child (#6)

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One participant described the discovery of insulin as a bit of a "serendipitous event",
discovered "a bit ahead of its time, so science had to catch up" (#3). The scientific 'catching up'
included the introduction of synthetic insulin and differing ways to deliver insulin such as the
pen and the pump. Many remember needles that were large and painful, so disposable needles
that became finer and shorter were a welcome addition to their box of tools.
Every participant described blood testing as a significant scientific breakthrough since his
or her diagnosis. Glucose testing historically started with dropping blood on testing strips and
comparing the strip to a colour chart, which was very subjective, to large testing machines, to the
small compact machines of today.
In the words of one participant, "the biggest breakthrough, biggest breakthrough, blood
testing. Ya, that to me was, like I wanted to celebrate that. Because it gave me the power to
self-manage and understand the results" (#2). Another suggested,
and then that also was when we started with the finger blood sugar checking, which to me
has been the biggest change in the fifty some odd years… I love what I have now with
the pump and I love all these new insulins but I could not live, I don't think, without
blood sugar testing because urine testing was ridiculous (#6).
All of the participants were diagnosed when urine testing was the norm and they all
commented on this form of testing as being an almost useless activity. For example,
up until then it was just urine tests and, and sorry I should confess, those weren’t fun, I
skipped out of those every time I possibly could, if no one bugged me about them I
didn’t…That was not, not fun. Um, and quite often when I did check there was usually
sugar in my urine. But you’re just on one shot a day...Yeah. Okay, so you're not going to
have a potato at dinner time, or like what? Like what are you gonna (do) (#4)?

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Another shared, "urinalysis testing and ketone testing… the results back then were horrible, they
were five hours old so you had no idea if you were doing good sugar wise or not" (#7).
Innovations continued over the years. Three of the participants were on an insulin pump.
One participant has invested in a continuous glucose monitor, but is not on a pump. Both of
these tools were described as facilitators for living well with diabetes. The following participant
explains why convenience is so important to living well with diabetes,
And convenience is, is important with diabetes because it makes the disease less of an
issue if you can have all of these things that are convenient around you. You know,
insulin pens and you don’t need to sit in a restaurant and draw insulin out of a vial and
make a spectacle of yourself. ...And so you know the decision to, well (do) I have to go to
the bathroom now or can I just sit here and enjoy this conversation. I just take my
insulin. So the pen’s been a huge breakthrough and even blood glucose monitoring. I
mean, it’s so small and efficient and quiet and you know, you can do those things…in
public places without anybody even really noticing...They think you’re checking your
phone (#5).
Another described the flexibility the new innovations have afforded her,
now there are so many varieties of short acting insulins and long acting insulins and I
take four shots for sure each day, but my goodness if somebody brings a cake into the
office at two o’clock in the afternoon and I want a piece, I can have a piece, if I don’t feel
like eating lunch at noon, I don’t have to eat lunch at noon. It can wait til one o’clock or
I can eat lunch at eleven, like, I find there’s so much more flexibility and options (#3).
One participant shared that when he was younger he would try to adjust the insulin to
accommodate treats in his diet, but because of the less effective insulin than we have now, he

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often experienced, what he described as "epic fails." Now, with the newer insulin he can
accommodate treats and still maintain control over his blood sugars.
As technology and treatment changed over the years, diabetes became a self managed
disease rather than a medically managed disease. The convenience of the newer treatments and
technology made managing diabetes more achievable. However, the new treatments and
technology added another layer onto the constancy of the disease, as can be seen in the next
section on the constraint of technology and treatment.
2.2 Technology/Treatment as Task Master
The drawback to newer technology and treatments was the cost associated with them,
both in time and money. Sometimes those costs dictated what the participant would choose,
affecting their ability to live well with the disease. For example, two of the retirees are currently
on insulin pump therapy and have been for years. A new pump will be needed soon and both are
considering going off pump therapy due to the expense, even though the pump has provided
good control for many years.
Pretty soon I'm going to need a new pump. That's 7500 bucks. I don't really have 7500
bucks. ...it's more and more and more expensive all the time. So, that is my biggest
regret, 'cause I, I'm kinda considering going off pump therapy... But, I, I've, pump therapy
has become a part of me (#2).
The tension between purchasing supplies and other activities in life are very real: "...I feel guilty
that I am going on a trip to the east coast, because I, I, I do need a pump, but I think I deserve the
trip" (#2). When asked 'if diabetes has given you anything', one participant replied: "It’s given
me an added expense line on my annual budget" (#5). Another participant replied to the question
'what helps you live well with diabetes?' with "...I’d say technology. And having money. You

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need both" (#6). Participants described health plans through work and wondered how people
manage without drug plans:
Luckily I have a very, very, very good uh, drug plan from work...I pay five dollars per,
per prescription and that’s it...So normally it would cost about $300 a month, I’m paying
maybe $20 a month, so and some people don’t have access, many people don’t have
access to things like that (#8).
Blood glucose meters, as mentioned earlier, were described as a necessity for selfmanagement. When they first came on the market, they were expensive and two participants
stated their families just could not afford them. Even today, the blood testing strips are
expensive, so the cost to the person with diabetes, if they wish to test several times per day,
becomes significant. Added costs include the medications that are necessary for the prevention
of complications, such as blood pressure and cholesterol medications.
Technology and newer treatments have provided tools to make living with diabetes a
much easier experience today than in the past. Conversely technology becomes a task master, as
blood testing a minimum of four times a day becomes the norm. The expense of the technology
and treatments were also described as a barrier to living well with the disease. However, the
participants shared how grateful they were for the technology and newer treatments and find they
do facilitate living well with diabetes. The newer technology and treatments have assisted the
person with type 1 diabetes to live independently with the disease. However, parents, spouses,
other family members, and medical caregivers provide a supportive role in managing the disease
as well.

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Theme 3: Self Reliance and Reliance on Others
Although type 1 diabetes is primarily a self managed disease, each of the participants
recognized the other supports in their lives. All but one of the participants were diagnosed as a
child or adolescent and thus the nuclear family in the childhood home had a great impact on the
management of diabetes. Today, many of the participants still credit family as an important
source of support in managing diabetes. As well, although medical management has transitioned
into self management, the participants continue to recognize the support of their medical team.
They do, however, note that the health system itself has created some barriers to living well with
diabetes.
3.1 Family Support
Don't hover...mistakes will happen... your child has the diabetes, you don't.
Advice to the family of a newly diagnosed child (#3)
The most significant support identified by the participants were family. Parents, in most
cases, were described as the first and greatest aide in learning to live with diabetes. Participants
shared that their parents sacrificed as a result of their child’s diabetes. One participant recalled
having a conversation with her mother about the many times her mother got up daily to sterilize
her child's syringes because, at the time of diagnosis, there were no disposable syringes. She
said her mother vividly remembers thinking: "... not again, have to do this, I’m tired, I
don’t....then she sorta said she talked to herself and said this is ridiculous, they are going to live
with it forever, I just have to do this till they’re gone" (#6). Other examples of parental support
included: a parent who worked until 4 a.m. and then got up to give insulin to his child at 7 a.m.;
and a mother who made arrangements to come to where their child was having a sleepover to
give her insulin, making it possible for the child to go for a sleepover. One participant lost his

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mother when he was age 15. He remembers thinking, "...mom and I worked it out together, and
there was always a lot of hugging, she held me close, made sure I gave it, and at fifteen, you’re
like, yeah this is all mine now" (#7). One participant credits his parents for supporting his
“owning" of the disease from the outset, "but the most important thing they gave me ...right from
the very framing it, in a, this is yours, you control it...And it’s setting that tone for everything
else to come" (#8).
As adults, the participants continued to indicate that family has a supporting role in living
well with diabetes, especially spousal support. Support from the spouse was often described as
being educated about diabetes and offering reminders when needed, "considering, consider how
you feel, what should you do, stopping for meal times, that kind of thing" (#6). One participant
described her husband as having a sixth sense about low blood sugars,
My husband has some crazy sixth sense, 7am on a Saturday morning he’s been up
already for an hour, I’m still being a teenager at heart and sleeping. And he’ll feel like
something isn’t right and he’ll come upstairs and check on me in the bedroom, and sure
enough I’m sweating. He’ll try to wake me, I’m not waking, so he sticks dextrose in my
mouth, checks me again in five or ten minutes. He is amazing (#3).
One participant was raised in a home with a strong faith in God. For years his family
prayed for his healing. Although he has not been healed, he attributes living well with diabetes
to his strong faith, the foundation of which was built within his birth family. Although he doesn't
know why he has diabetes, he fully believes God will heal him, either on this earth or in heaven.
God is his most important support. This motivates him to live well with diabetes.
Family was described as the base of support when learning about diabetes and continues
to be a support into adulthood. Parents were the first teachers and helpers of the child or

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adolescent learning how to manage diabetes. However, these participants also described living
through the years when diabetes was primarily medically managed and witnessed firsthand the
transition to self management.
3.2 Medical Management and Self Management
It’s yours. You own it.
Advice to a newly diagnosed child (#8)
Diabetes care in the early years was described as medically managed rather than self managed. This meant that the physician most often took the primary role. A shift in philosophy
began to occur in the late 1970s when self-management and a health care team approach took
precedence. As explained by one participant, "your results weren't dis(cussed), you weren't part
of the team, ...I learned …about the team approach later on" (#2). The core team was described
by the participants as the general practitioner, the endocrinologist, an optometrist or
ophthalmologist, a nurse educator, and a dietitian. Other team members included podiatrists,
pharmacists, massage therapists, and physiotherapists. One participant included his personal
trainer as a member of his health care team. The participants considered themselves as having
the central role in the team. When asked to enumerate the team, one participant listed himself
first as "the number one person who should be in control. And the other people are the supports"
(#8). Another participant suggested,
I feel quite honored because I feel like I’m in the middle of this group of doctors who are
doing everything to keep me going and they encourage me to keep going and not to
stop....I’m like the quarterback because I’m the guy they’re protecting in the middle (#7).
Since diabetes is chronic, oftentimes the participants described the relationship with their
team as closer than a typical client-health care provider. This relationship, in some cases, has
extended over decades. As one participant described it,

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Ask me about how I’m doing with things in life, I’m going to be your patient for 25-35
maybe 40 years, get to know me, get to know your patients. I have one doctor, my renal
specialist, Dr. O, he’s like that. He’s this old fashioned hippie, big bushy beard, he likes
Stanley Kubrick, he’s had raccoons, we sit and talk, you know. I like that and I think that
when you go into a doctor's office and you feel like you’re being spoken to, not as a
number to the doctor, you feel, I come out of my clinic feeling better, like I want to do
better, I want to hear better from the doctors. Other doctors in the past, (were) like ‘okay
yeah, here you go, here you go, here you go, take care’ and it’s always like ‘that was a
waste of my time’. Everybody likes to have the acknowledgment of accomplishment,
everybody likes that, whether it’s health life, work life, everyone wants
acknowledgement and when I see Dr. O, he chit chats, so how are your daughters doing?
He knows their names (#7).
One participant spoke about a particularly traumatic low blood sugar for which she got admitted
to hospital. She cried when her specialist came into the room, "So, anyway, Dr. L was there.
And, he, I, I looked at him, and I bawled like a baby. I, 'cause I still had, I was a mess. And
...just, he just held me" (#2). This personal touch was what she needed at the time.
As noted, health care providers offer an important supporting role for the participants
with type 1 diabetes. But how they assumed that role varied. Some diabetes specialists were
described as knowledgeable and supportive about living with diabetes. For example,
I suppose, I mean I don’t know, (name of diabetes educator), I'd swear somewhere in the
back of her brain she’s a diabetic because when I talk to her about things she’s like yeah,
she understands it. She’s my focus back, she can explain things to me, she can talk to me

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as if she already knows. It’s a great relationship I have with her, it’s always been kind of
sporadic but when I’m with her it’s like, yeah, she gets it (#7).
However, participants also reflected that it is impossible to learn diabetes from a book –
you have to live it. So, in several cases, participants suggested that the diabetes educator or
specialist should not be able to take that role unless they themselves have diabetes. For example,
one participant suggested,
if you took the book away from them, how much (do) they actually know, zero. They
read a book, …and it's a practice makes perfect disease. So, if you have no personal
practice with it, dealing with it, you never learn (#1).
Another participant was more direct,
well first of all I wish they all had diabetes. I wish they all had acute type1 diabetes. That
would be the first thing I wish on all of them...They all get the disease, if you don’t have
the disease you can’t be in this profession. You know? Endocrinologist, you wanna
make $800,000 a year, you’re going to have to take insulin every day. That’s just one of
the qualifications to get through this door, that’s what I would wish on them (#3).
The suggestion of healthcare providers having diabetes was about the provider having empathy
for all the person with diabetes has to experience. Other participants mentioned empathy as well,
although not in the context of the provider having the disease. They suggested that healthcare
providers should be constantly aware of the never ending demands of the disease; that treatment
options may need to be thought of "outside of the box"; and to not always be "on your case" or
demanding of different behaviour.

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The shift from medical management to self management was described as a positive by
all of the participants. However, the medical system itself continued to make demands on the
person, causing a dependence that many of the participants resented.
3.3 System Dependence
I would say get, get a, get a human being as a GP, not just a doctor, get a human being and then
try to get a good medical team around you and do what they say, learn as much as you can as
early on as you can so you can be your own physician.
Advice to a newly diagnosed child (#8)
In spite of the advances in technology and treatment that have made it possible for all of
the participants to be self managed rather than medically managed, there were expressions of
frustration with the medical system. Annoyance was expressed about the number of doctors’
appointments and the way the system imposes greatly on their life. One participant, when asked
'What has diabetes given you?' responded, "Oh, it’s given me... lots of doctors’ appointments"
(#5). The participant diagnosed as a young adult found it stressful to have to go for lab work in
the morning because she would miss work, "I remember my heart just pounding because I was
stuck at the lab, ...and going, well you know they are going to be watching me in the workplace,
so ...that caused me a lot of stress" (#2).
Another participant expressed annoyance at attending doctor's appointments to learn
nothing,
There’s the endocrinologist who is basically useless, they give you your numbers every
six months. I tell mine, I said, you know, why do I come to see you in (city) here, what
the hell am I doing? I got approached by three panhandlers while I was parking my car
here, one of them is trying to vandalize it right now, you know, why am I coming to see

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you? And she says well that’s the only way I can get paid. I said well ...isn’t that ever
stupid, eh? It is. So I got to go to (city) and back so she gets paid. I said, put two visits
down. Cause I, I’m talkative today, put two visits down and I’m bitchy, you don’t help
me with anything (#3).
Frustration was also expressed about health care providers who do not recognize the
expertise of the person with type 1 diabetes. A participant was in the hospital with an infection
and her blood sugars were, as she described, 'through the freaking roof'. She was in a teaching
hospital and every day the doctors would come around with their residents and talk at the end of
the bed. She describes how every morning she would request to manage her own diabetes,
so every morning when they were there I would explain ‘guys can I please do my own
insulin, can I please manage my diabetes properly’? Finally, must have been about the
fourth morning, it was the same group every morning. One of the doctors turns and looks
at me and he says, he asks me a few questions about diabetes, I answered them all
appropriately. And he looks at the group and he says ‘why are we not letting her manage
her diabetes, look at these blood sugars we’re running here, this is ridiculous’ (#4).
Another participant shared,
I do remember, uh, one newer doc coming in…and she started lecturing me on nutrition
and stuff like that and I said, I just said to her ‘wait a minute I’ve been living with this, at
the time for thirty plus years. I know what I’m talking, I know about nutrition’ (#8).
Another participant relayed a story about calling 911 because he was feeling unwell
while driving. He did not want the ambulance dispatched, but it was and he was asked to pull
over. He asked the dispatcher to have the attendants bring fast acting insulin, as he felt his
symptoms were due to a high blood sugar. However, because chest pain was one of his

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symptoms, he had called 911. The ambulance arrived with no insulin. The participant had also
called his wife and she arrived with insulin whereby he was able to treat his blood sugar,
resulting in the disappearance of the symptoms. He went to emergency because of the earlier
chest pain. During a seven hour wait he had his blood drawn, "I said I’m going to let you take
my blood but you know how ridiculous this is, by the time you analyze this I’ll be sitting with
my slippers on by my fireplace at home with my blood sugar perfect" (#3). Finally he was seen
by a doctor and was able to tell his story, "the doctor says, I tell him a little bit about, he says
don’t ever come to emergency again... he says you know exactly what you’re doing" (#3).
The health care system, with its rules and bureaucracy, has been described as a barrier to
living well with diabetes. Numerous medical appointments that, at times, appear unnecessary
and lack of recognition of the participants' expertise in diabetes management were both
expressed as frustrations for the participants. However, health care providers within the system
were some of the first diabetes educators for the participants.
Theme 4: External and Personal Knowledge
All of the participants expressed different ways of seeking knowledge, including how it
had transitioned from face to face sessions with diabetes educators in the beginning to self
motivated knowledge seeking through the internet, through taking courses, and through
relationships with health professionals. As they were increasing and augmenting their
knowledge, they also noted they had to educate others. Participants shared that many people
around them lack diabetes knowledge, including the difference between type 1 and type 2
Diabetes and not understanding the unrelenting demands of the disease. The lack of knowledge
was noted in friends, relatives and health care professionals.

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4.1 Knowledge Seeking
I would assure them that this is manageable, it’s going to right now seem very overwhelming and
there’s going to be a lot of information coming at you, it’s going to be okay, pay attention, pay
attention to the information you’re given, know that it’s going to be okay.
Advice to family of a newly diagnosed child (#4)
Learning how to manage diabetes initially occurred through face to face diabetes
education with health professionals or, in many cases, with the parent of the newly diagnosed
child. The participants recognized the need for and acknowledged the positive aspects of inperson diabetes education when initially diagnosed and even for some years afterward, but the
longer they lived with the disease, the less desire they expressed for that type of education. One
participant described the in-person formal diabetes education as, "you get to the place where you
sort of stop, I wouldn’t say you stop learning but you stop ...you know, your back is against the
chair now instead of leaning forward like it was all those years" (#3).
Two of the participants are health professionals and had been certified in diabetes
education. However, one chose not to renew his certification. He shared,
and I didn’t maintain it because I found that the people that I felt I could talk to, because
now I was a certified diabetes educator, they didn’t, they weren’t necessarily as engaged
with me until I told them I had type 1 diabetes. ...Then they started to listen. …So, so the
credentials didn’t mean anything...But the fact that I had diabetes, then it suddenly now
meant something (#5).
Knowledge seeking did not cease as the participant aged, but rather different education
avenues were used such as the internet, conferences, and Canadian Diabetes Association (CDA)
webinars. A couple of the participants were heavily involved with the CDA in the early years of

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their diabetes and were instrumental in planning diabetes conferences. In fact, the CDA was
identified as an important source for learning about diabetes in the early years, including camp,
family days and parent sessions. One of the participants involved with diabetes camp described
it as a venue where a lot of children/adolescents learned independence. Although he felt camp
was overall a positive, he did note that camp could also be a place where bad habits were
learned. He described teenage girls learning informally from other campers about taking less
insulin in order to lose weight.
Participants expressed interest in innovations and research that would improve living
with the disease. They sought out new information primarily through checking with the
endocrinologist about 'what’s new' or researching the internet. A couple of the participants had
ongoing relationships with one or more diabetes educator, whom they felt they could 'touch base'
with informally through texts or email.
All of the participants expressed they felt knowledgeable about their disease and that the
time of sitting down with a diabetes educator was in the past. Rather, now they were much more
self directed in their knowledge seeking, which is synchronous with the concept of self
management. However, as will be noted in the next section, they were often confronted by
others who had limited knowledge about diabetes.
4.2 Lack of Knowledge of Others
... try to advance the knowledge and the lifestyle of people with diabetes to enhance other
peoples opportunities behind you. And you will benefit from those experiences as I have...
Advice to a newly diagnosed child (#3)
Dealing with misconceptions and outright erroneous information of family, friends and
health care providers was commented on by several participants. For example, one participant

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spoke about a co-worker offering to get his insulin when he had a low blood sugar. Another
spoke about family members believing that type 1 diabetes can be cured through alternative
medicines, "There are some family members out there who still believe diabetes can be cured if I
take this vitamin or consume more cinnamon or see this reflexologist...Their freaking alternative
practitioners and vitamin pills are not going to cure anything" (#4).
Examples of people not understanding simple things, such as that both sugar and honey
are simple sugar were shared, "I remember my grandmother saying, I was having tea with her,
and she offered me some sugar and I said ‘well you know sugar’s not good for the diabetic’ so
‘well here’s some honey, it’s natural, it’s not sugar’" (#8). Or what a carbohydrate is, "I’m
surprised when I used to volunteer and teach, for lack of a better term, diabetes 101, and how
many people didn’t understand what a carbohydrate was. Dudes, come on, this is second nature"
(#8).
Frustration was expressed about people not understanding the difference between type 1
and type 2 diabetes,
I get tired and I love my friends for this, and my family, I get articles sent to me, through
Facebook or my dad will call me and ‘oh saw this in the news about a cure’, and I’m like
dad, it’s type 2 (#7).
I think the general population, well you know this too, has no clue of what it’s like. So I
don’t know how you correct that because they just all think it’s just fat uncle joe, just stop
eating and start exercising and it's so different with type 1, I mean it’s totally different
(#6).
As indicated, there was mention of the general lack of knowledge of others about type 1
Diabetes and how to manage it. Participants identified this as a barrier to living well with type 1

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Diabetes. Alternative medicine as a cure, lack of basic understanding of physiology, and the
confusion between type 1 and type 2 diabetes were the specifics that were shared.
Chapter Summary
Eight participants with 40 to 52 years of experience living with type 1 diabetes shared
their thoughts and experiences on how to live well with the disease. The impact of the diagnosis
of diabetes was identified as a turning point in their lives and they described stages in the 40+
years when it was more of a challenge to live well with the disease than at other times. They all
described times of accommodating and times of battling the disease.
Each participant integrated diabetes into the routine of their life, which along with a
positive life attitude, facilitated living well with the disease. Living in balance and recognizing
that it was achievable to live well with diabetes were identified as a mindset that helped with
successful diabetes management. A number of the participants identified positive benefits
diabetes had given them, such as developing skills and fostering healthy lifestyles. However,
integrating the disease into their life did not pre-empt the fears and losses associated with the
disease.
The concept of mortality became a reality for them at a younger age as they were
bombarded with messages about the damage diabetes could do to them. It seems the recognition
that they would not live as long as their friends was common and, in one case in particular, led
the participant to experimenting dangerously as an adolescent.
Daily injections were identified as an initial fear that is now only tolerated as a necessity
of life. Childhood was fraught with losses such as Halloween activities, lack of sleepovers, not
being invited to birthday parties, or being invited and not allowed to partake like other children.
Adolescence was a difficult time, as diabetes made them more dependent at a time when they

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were trying to assert independence. Risky behaviour often prevailed during this time, including
rebellion against diabetes. Young adulthood provided challenges to diabetes control as the
women traversed pregnancies made more difficult due to diabetes, and the business of education,
career, and starting a family pushed diabetes into the background, resulting in less control of the
disease. Aging also contributed to loss of diabetes control as other chronic diseases took
precedence, physical activity was reduced, and the physiology of aging itself interfered with
control (e.g., menopause).
Stigma was also described, whether overt, such as deliberate shunning on Valentines
Day, to subtle, such as not being invited to birthday parties. Other losses included choices that
were made to try and accommodate diabetes such as not travelling, not having children, not
choosing the career of their dreams, and dropping out of activities they enjoyed.
Diabetes was described as unrelenting, with no holidays from the daily pressure of
keeping blood sugars under control. All the participants expressed that fluctuating blood sugars
are a fact of life with diabetes, and trying to keep blood sugars balanced is a battle or fight that is
constant. Daily life is impacted by high blood sugars that were described as affecting
concentration and emotions, and low blood sugars, which could be life threatening. Traumatic
hypoglycemic events were shared by a number of the participants.
Technology and newer treatments, especially blood glucose testing were lauded as
making life better for the person with diabetes, improving wellbeing, and allowing the person to
self-manage. The convenience of these new innovations allowed for a flexibility and
transportability that made controlling the disease much more achievable. However, these same
improvements were also outlined as barriers to living well, contributing to the unrelenting 24/7
nature of the disease. Blood testing provided the data for treatment decisions, but it also meant

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testing occurs many times a day, equipment has to travel with the person, and he/she must
always be aware of what the technology needs (e.g. charging, more strips, refilling). As well, the
expense related to technology and newer treatments was described as a challenge for living well
with diabetes. Participants expressed that they may have to choose between the financial
expense of treatment that has worked well for them and other activities in life.
Although self-reliance or self management of diabetes was primary, all participants also
shared experiences about their reliance on the support of others. Parents were often the first line
of support for the participants. They were the first teachers, and sacrificed to make the
child/adolescent's life better. Family continued to be a support in the future, mostly in the form
of spouses who supported with reminders and accommodations for the disease.
Reliance on medical personnel has continued to this day, however disease management
has evolved from primarily medical management to primarily self management. Since self
management has become the norm, most participants describe their care providers as a team,
with themselves as team leader. Participants also spoke about the unusual long term relationship
with health professionals, sometimes thirty years or more. The medical personnel who see the
person with type 1 diabetes as a person with a full life were appreciated more than those who
saw the person as a ‘number’. There were stories of the doctors or diabetes educators who knew
the names of the person's family, knew their interests, and knew them as a person. Those were
the health care providers who generated a desire to 'do better' with their diabetes management.
Although self management was described as the current norm in diabetes care, the
participants shared that, in some cases the system had not caught up to that philosophy.
Numerous doctor's appointments that were not felt to be useful were a frustration. Situations

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were also described that involved the protocols or policies of the system making it impossible for
the person to self manage, for example when admitted to hospital.
Finally, the participants shared how they increased their personal knowledge of diabetes
and their frustration at the lack of general knowledge about diabetes. Although each participant
had at least some formal diabetes education within the health care system, none are seeking that
type of education now. These participants want information on new innovations or research on
better treatment methods or a cure. Knowledge seeking is through the internet, asking an
endocrinologist at a regular appointment, or informally touching base with diabetes educators
through email or text.
Frustration was expressed about the lack of knowledge of the general public, including
family and friends, about type 1 diabetes. There was discussion about: the general lumping
together of type 1 and type 2 diabetes when they are two different diseases; alternative
medicines, and how well-meaning relatives and friends frequently provide information on the
latest 'cure all'; and lack of general knowledge about the basics, such as the fact that insulin
reduces blood sugar. These examples of lack of general knowledge were described as frustrating
for the participants.
In this chapter, the stories of the participants who have lived 40 plus years with type 1
diabetes have been interpreted into themes and contextualized with the participants’ own words.
The next chapter, Discussion, will be the venue to examine, reflect and reinterpret the themes
“within the context of other literature” to determine what the study “means” (Thorne, 2016, p.
215).

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CHAPTER FIVE: DISCUSSION
The discussion chapter provides an opportunity to examine this study in relation to other
research. This layer of interpretation allows the findings to be placed within the context of past
research, either providing support for earlier findings, noting contrasting results with past
research, or illuminating new insights.
Previous research into living long term with type 1 diabetes tends to be sparse, with an
extensive literature search revealing no articles that specifically address this population.
However, research exists that addresses some of the ages and stages of diabetes that are
comparable to what was learned through this study. Research results that resonate with the
participants’ experiences include: the unremitting responsibility of diabetes that coincides with
the concept of diabetes distress; the development of collegial relationships with health care
providers leading to improved management; and the lack of general community knowledge about
diabetes, especially the difference between type 1 and type 2. No research studies were found on
the losses experienced by those with type 1 diabetes and the burden that technology places on the
person with type 1 diabetes. Finally, this population has essentially chosen to exit from formal
diabetes education and there seems to be little to no research on how, or even if there is a need,
to reconnect them.
Ages and Stages of Type 1 Diabetes
There are a number of studies that examine the ages and stages of living with diabetes primarily focusing on the stages of childhood to young adulthood. Because the participants from
this study have lived through and experienced those ages and stages, they were able to comment
on each.

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The literature on the experience of type 1 diabetes in childhood and adolescence
introduces the concept of desiring to be ‘normal’ (Babler & Strickland, 2015b, p. 89; Freeborn et
al., 2013; Huus & Enskär, 2007; Marshall et al., 2009; Spencer et al., 2013). However, this
desire to be ‘normal’ does not end with adolescence; it carries on into young adulthood and
beyond (Balfe et al., 2013; Ingadottir & Halldorsdottir, 2008). The current study extends this
concept even further, noting that the participants continue to seek normalcy by integrating
diabetes care into the routine throughout their lives. However, participants also noted that
diabetes interferes with the routine or the norm, due to sneak attacks of hypoglycemic events and
the demands of vigilant care. In the same way that Huus and Enskär (2007) describe the life
experience of the adolescent with diabetes as a "pendulum swinging between normal and being
different" (p. 29), the participants – having lived with diabetes for 40+ years – suggested they
oscillate between the factors that facilitate living well with diabetes and those that challenge
living well with diabetes.
Many of the ages and stages described by the literature as problematic were validated by
the participants of this study as stages of difficulty in coping with diabetes. Adolescence, for
example, was described by the participants as fraught with difficulties, often related to the
seeking of independence from parents-something also noted in the Babler and Strickland (2016)
study. Young adulthood was described by some of the participants as a time of abdication of
some of the responsibility of managing diabetes as other life activities such as education, career
and family took precedence; this supported the findings in the Balfe et al. (2013) study. Where
past research and this research diverge, however, is discussion of the adult entering their 5th and
6th decade of life. The difficulties in managing type 1 diabetes as concurrent chronic diseases
appear such as arthritis and adult onset asthma were described by the participants as taking

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precedence at times over diabetes, thus, causing the management of diabetes to be less than
optimum.
Stigma and Loss
Participants described experiences of stigma. However, this was described mostly in
terms of the past - for example not being invited to birthday parties as a child. Interestingly,
events that could be construed as stigma such as not being allowed to take a sick day from work
for specialist appointments, or being told 'you can't have that, you have diabetes', were not seen
as stigma by the participants. This finding is different from the Browne et al. (2014) study from
Australia that identified blatant stigma in their study of adults with type 1 diabetes. Further
research would be needed to determine if, perhaps, this could be explained as related to cultural
differences between Canadian and Australian participants.
Although stigma was not viewed as a substantial barrier to living well with diabetes, loss
was a recurring theme. The participants identified travel, not having children, not choosing a
specific career, and dropping out of activities they enjoyed, as losses that were all directly related
to diabetes. Existing research does not address the losses that the person with long term type 1
diabetes has encountered. A significant loss identified by the participants was the loss of the
young person’s sense of invulnerability. All of the participants spoke of recognising their own
mortality early. In fact, many spoke of how the message of early mortality was imposed on them
by friends, family, health care providers, and media. At the time this group of participants was
diagnosed, life expectancy for a person with diabetes was reduced by 27 years (Goodkin, as cited
in Miller, Secrest, Sharma, Songer, & Orchard, 2012) and this may have contributed to this
finding. As new innovations have occurred in the diabetes field, life expectancy has improved.
For example, in their prospective, study Miller et al. (2012) found that life expectancy is reduced

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only 4-6 years for those born in the 1960s and 1970s. More research is needed to determine
whether this early awareness of mortality is experienced more acutely by those who were
diagnosed when life expectancy was significantly reduced.
Diabetes Distress
The participants indicated that the unrelenting nature of type 1 diabetes was a challenge
to living well. Schwartz et al. (2017) suggests that diabetes management can be “the equivalent
of a part time job…and may eventually overwhelm patients’ capacity of handling the diabetes
workload” (p. 35). This constant vigilance can be an assault to the person’s mental health.
Depression has been increasingly recognized in people with diabetes, with approximately 30% of
all people with diabetes experiencing clinically relevant depression and 10% having a major
depressive disorder (Robinson, Luthra, & Vallis, 2013). Recently experts in diabetes and mental
health have been suggesting that the symptoms that lead to a depression diagnosis, in many
cases, may not be depression but are in fact diabetes distress (Esbitt, Tanenbaum, & Gonzalez,
2013; Robinson et al., 2013; Strandberg, Graue, Wentzel-Larsen, Peyrot, & Rokne, 2014; Sturt,
Dennick, Due-Christensen, & McCarthy, 2015; Vallis et al., 2016).
The term diabetes distress has been around for more than two decades (Polonsky et al.,
1995) but has only recently “achieved a sharper focus in clinical practice” (Sturt et al., 2015, p. #
needed). Diabetes distress is defined as “the despondency and emotional turmoil related
specifically to having the condition, the need for continual monitoring and treatment, persistent
concerns about complications and the potential erosion of personal and professional
relationships” (Robinson et al., 2013, p. 89). The measures used to determine a major depressive
disorder do not account for life stressors “that may be causally related to depressive symptoms”
and thus are not sensitive to diabetes distress (Esbitt et al., 2013, p. 28). Esbitt et al. (2013), in

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his chapter titled “Disentangling Clinical Depression from Diabetes-Specific Distress: Making
Sense of the Mess We’ve Made”, suggests that if the depression is actually subclinical diabetes
distress or if the depression is secondary to diabetes distress, antidepressants are not going to be
effective.
Numerous expressions of diabetes distress were expressed by the participants including:
descriptions of diabetes being a fight or battle; feeling as if they wanted a holiday from diabetes,
but recognizing there were no holidays; needle phobia and ongoing dislike of needles; the trauma
of severe hypoglycemia; the frustration of constantly fluctuating blood sugars; the expense of the
disease; and the constant responsibility of managing the disease, with all its component parts
(e.g. diet, testing, exercise, medical appointments). It appears that the length of time a person
has diabetes may not mitigate the distress of dealing with it. This is an important finding in light
of newer studies indicating that distinguishing between major depressive disorder, depressive
symptoms, and diabetes distress is very important because, of the three conditions, “diabetes
distress may be most strongly related to adverse diabetes outcomes” (Robinson et al., 2013, p.
89; Strandberg et al., 2014).
Two well validated scales for measuring diabetes distress have been developed; the
Problem Areas in Diabetes Scale (PAID) and the Diabetes Distress Scale (DDS) (Esbitt et al.,
2013; Polonsky et al., 1995; Sturt et al., 2015). Sturt et al. (2015) reviewed the evidence for
diabetes distress in type 1 diabetes using both the PAID and DDS and determined diabetes
distress is elevated in 20-30% of those with type 1 diabetes. Another study examined diabetes
distress in 305 adults with type 1 diabetes in the U.S. and then followed with a confirmatory
study with another 109 Canadian participants (Fisher et al., 2015). The authors in this study,
determined the DDS was not specific to type 1 diabetes and thus developed a new measure– the

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T1-DDS. Seven major sources of diabetes distress were identified: powerlessness, which related
to the fluctuations in blood sugar and the difficulty in managing those fluctuations; management
and eating, which highlighted the food restrictions and worries about monitoring; hypoglycemia,
which focused on the fear of the traumatic lows that can lead to embarrassment and risk;
negative social perceptions, which referred to other people treating them differently and worries
about the way employers perceive them; family/friend distress, which refers to the family and
friends who try to police them or, alternatively, who take no interest in their diabetes; and finally
physician distress, which relates to not receiving appropriate support from the physician. Over
40% of the participants experienced moderate diabetes distress using this new measure (Fisher et
al., 2015). Powerlessness received the highest item rating, with management/eating and
hypoglycemia having the next highest levels, (Fisher et al., 2015, p. 7), which underscore the
unremitting demands of diabetes care.
In spite of the relentless responsibility of type 1 diabetes, all of the participants in this
study exhibited and stated that a positive attitude helps them live well with the disease. This
supports Stucky et al.’s (2014) findings, through the multinational DAWN2 study, that "having a
positive outlook and sense of resilience in the midst of having diabetes" (p. 2466) was a
facilitator for adapting to diabetes.
Technology as a Burden
Technology, although a benefit to diabetes self-management, was also identified by the
participants as a burden. Technology is a fact of life in type 1 diabetes management today,
perhaps more so than in any other chronic disease (Gonder-Frederick, Shepard, Grabman, &
Ritterband, 2016). Although technology has improved living with diabetes in many ways, there
is little recognition in the research of the life burden that the technology imposes. This is an area

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of research that needs further exploration, both for current and future technology use. As stated
by Gonder-Frederick et al. (2016), “the hope for the future is that the development of diabetes
technology will occur more in tandem with the development of psychological and human factor
research” (p. 585).
Relationships with Health Professionals
Participants indicated the relationship with health care professionals could be a source of
support or another source of stress. Because of the chronic nature of type 1 diabetes, the
relationship with health care professionals may extend over decades. Participants expressed a
desire to be approached in a collegial manner by health professionals; they wanted their care
providers to acknowledge they did most of the work of diabetes care and thus were experts in
managing their own disease. Doctor’s appointments that seemed to serve no purpose were
described as frustrating. Often participants described health professionals as judgemental who
did not recognize the moment by moment responsibility of living with type 1 diabetes. Several
participants went so far as to suggest that health care providers working with people with
diabetes should have the disease, with one suggesting it is a “practice makes perfect” disease,
asking rhetorically, if you don’t have practice how can you advise?
Other studies have also emphasized the need for the health care provider to treat the
person in a non-judgemental way and to recognize them as an expert in the management of their
own diabetes (Richards et al., 2006). A consensus report developed by a number of diabetes
experts convened by the American Diabetes Association recognized the multidimensionality of
diabetes management – that management cannot by extricated from the individual’s context
(Marrero et al., 2013). The authors identify several recommendations for health care providers
that support a collaborative model “where patients and clinicians relate as equals”(Marrero et al.,

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2013, p. 465). The concept of judgement is also addressed in this consensus paper, as the
authors suggest that laboratory tests be viewed as “feedback instead of judgement” (p. 465).
Health care provider empathy was important to the participants, including the recognition
of the day-to-day challenges of dealing with type 1 diabetes. Health care providers often
approach sub-optimal blood glucose control by focusing on diabetes management and trying to
increase the person’s skills or knowledge about the disease (Schwartz et al., 2017, p. 40).
Schwartz et al. (2017) suggests another approach would be to talk less about diabetes and its
management and more about the patient’s life, although that may seem "counterintuitive" (p. 40.
Trust and a therapeutic relationship can be nurtured through this approach, ultimately resulting in
better diabetes management. A challenge is that in this hurried world of health care, time is at a
premium, and the time needed to nurture relationships may be seen as expendable. As suggested
by Schwartz et al. (2017), physicians cannot afford to spend time on relationship building in a
"fee for service environment that rewards volume over quality" (p. 40).
Diabetes Education
Classic diabetes education (in-person with a nurse and/or dietitian) was not something
participants in this study sought out. Rather, they sought out (and found useful) education that
could fit into their lifestyle, which included the internet, quick emails or texts to others, or asking
questions to the endocrinologist during a regularly scheduled visit. These participants did not
stop learning, although after 40 years of living with the condition they no longer felt the need for
the classic diabetes education. It was intimated that they felt this type of diabetes education was
more geared to people in the beginning stages of learning about diabetes. No research was found
regarding how to reach this particular audience for ongoing diabetes education. In some ways
this audience is lost to diabetes education system, having ‘dropped out’ many years ago. Further

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research is needed to determine how to meet the educational needs of those with long term type 1
diabetes.
Lack of Community Knowledge
Participants in this study commented on the lack of knowledge about type 1 diabetes in
the general community. The DAWN2 study revealed that the respondents to the survey felt that
"the experience of support was found to be lower, especially for type 1 diabetes" within
community and work environments (Vallis et al., 2016, p. 240). A lack of understanding was
also noted about the difference between type 1 and type 2 diabetes (Vallis et al., 2016).
Recommendations from the DAWN2 study included a “public education campaign to increase
awareness of and support for people living with diabetes, particularly to clarify the differences
between type 1 and type 2 diabetes” (p. 240). Findings from this study align with findings from
the DAWN2 study in this way.
Chapter Summary
Rich information was shared by the eight participants of this study. The information on
the ages and stages of diabetes fit well within the context of past research; the difficulties in
living with type 1 diabetes as an adolescent and young adult were expressed. The process of
‘normalizing’ diabetes seems to be never ending for these participants. They described fitting
the management of type 1 diabetes into their daily routine, similar to brushing teeth. Some
stigma was described, but the group overall did not feel stigmatized, such as was described in the
Australia study (Browne et al., 2014). Though these participants expressed similar experiences
to those in the Browne et al. (2014) study, they did not refer to these as stigma; they did not feel
stigmatized. Instead, “loss” was a stronger theme for these participants—something identified in
this study as a gap in the literature. A particularly poignant loss was the participants’

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experiences of their early recognition of mortality. Diabetes distress was encompassed in the
descriptions the participants shared relating to the unceasing demands of diabetes management.
Little research has been done on diabetes distress in the type 1 diabetes population, and none
exists on those living long term with diabetes. Although technology has been recognized in
research articles for the benefits it has brought to the self-management of diabetes, there is scant
research on the impact that technology has on quality of life for the person with type 1 diabetes.
The participants shared their ideas regarding qualities that foster a good health professional
relationship, and some that hinder it. Interpersonal communication that shows the professional’s
interest in the person beyond diabetes was highlighted, and research has supported this finding.
They also noted ways in which diabetes education is primarily self-directed. Finally, lack of
community knowledge about diabetes was noted to be, at the very least, an annoyance factor for
the participants of this study, and at the most, dangerous misinformation. This aligns well with
findings from the DAWN2 study, which supports the need for increased community education
on type 1 diabetes (Vallis et al., 2016). Chapter Six outlines the recommendations for health
professionals based on this study.

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CHAPTER SIX: CONCLUSIONS AND RECOMMENDATIONS
The methodology of Interpretive Description was created for nurses by nurses, with the
primary purpose to provide meaningful knowledge "in a world of practical application" (Thorne,
2016, p. 229). Although the method was meant for nurses, the participants from this study
provided information on practical implications for health care providers as a whole.
Accordingly, the recommendations will be reported from a health care team approach. This
resonates well with the participants as many described a health care team approach in relation to
their diabetes care, a team that was directed by the participants, and which includes nurses.
Interpretations and recommendations cannot, in good conscience, be viewed
independently of considerations of good research. The scientific quality in relation to this
research, based on Lincoln and Guba's framework (as cited in Polit & Beck, 2017, pp. 559-560),
was discussed in Chapter 3: Methodology. Thorne (2016) suggests moving beyond typical
evaluation criteria to include moral defensibility, disciplinary relevance, pragmatic obligation,
contextual awareness, and probable truth. Prior to describing the recommendations for practice,
each of these criteria will be considered in the context of the current study. This will be followed
by recommendations for practice and suggestions for further research resulting from the
interpretation of participant discussions.
Beyond Evaluation Criteria
Because qualitative research is expected to influence practice, it makes sense to return to
the initial research question to determine whether the data collection and "interpretive strategies
...follow logically from that question" (Thorne, 2016, p. 233). The research question in this
study was: What do persons living with type 1 diabetes for forty years or more perceive as

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facilitators and barriers to living well with diabetes? And the main questions guiding this study
were:
1. How do persons living with long term type 1 diabetes define “living well” with diabetes?
2. What do persons with long term type 1 diabetes perceive as facilitators to living well with
diabetes across their lifespan?
3. What do persons with long term type 1 diabetes perceive as barriers to living well with
diabetes across their lifespan?
4. How might health care providers support “living well” with long term type 1diabetes?
Each of these questions were addressed through the study.
Moral Defensibility
It is important to examine how the research findings may benefit people with long term
type 1 diabetes. These findings are not just interesting stories, but provide a deeper
understanding of the challenges of living with long-term diabetes. This deeper understanding by
care providers may lead to improved care approaches and a higher quality of life for those
experiencing this disease. Those with long term type 1 diabetes did not seem to have a "voice"
in the current research literature. This project provided that voice, and the interpretations of the
findings led to recommendations for improving type 1 diabetes care and education for those
living long term with the disease.
Disciplinary Relevance
The number of people being diagnosed with type 1 diabetes is increasing, the treatment
modalities continue to improve, and the life expectancy gap for people with type 1 diabetes is
narrowing towards the life expectancy of the broader population. As the population of people
living with type 1 diabetes continues to grow, so will the need for strategies to provide optimal

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care. The development of care approaches that take patients’ own experiences into account can
provide a more meaningful discourse for care providers. Thus, the practical implications on how
to best serve this population will continue to grow, making this research relevant to practice.
Pragmatic Obligation
Pragmatic obligation refers to the possibility that the study may have an impact on
practice. Accordingly, it is important to recognize the limitations when suggesting the findings
may transfer to a more general knowledge. This study was limited to eight individuals with long
term type 1 diabetes who had similar characteristics. Repetition of the study with a more diverse
group would assist in making the findings more generalizable. However, from the perspective of
pragmatic obligation the researcher examined the findings within the context of other research
and "'as if' they might be applied in practice" prior to setting the recommendations for practice
down within this chapter (Thorne, 2016, p. 237).
Contextual Awareness
The researcher identified her contextual biases through a reflexive journal throughout the
study, and attempted to bracket them. However, as Thorne states, "perspectives are inevitably
bounded by their historical context as well as by their disciplinary perspective" and "we cannot
see what we cannot see" -- making it clear that it is impossible to extricate the researcher from
the research (Thorne, 2016, p. 237). However, it is hoped that the expertise of the researcher as a
health professional having worked in diabetes education and the spouse of a person with long
term diabetes would add to the richness of the study, while also recognizing the inherent
possibility of bias.

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Probable Truth
Thorne (2016) reminds us that qualitative research cannot provide absolute truth.
Though as researchers we desire to produce credible results, it is imperative that we accept the
limitations on validity within qualitative inquiry. However, qualitative inquiry does provide us
with meaning from people's experiences. This study has been undertaken to find meaning that
has practical application for those living long term with type 1 diabetes.
Implications for Practice and Further Research
All eight participants had a rich history of living with type 1 diabetes for 40 years or
more. Participants were able to share their practical wisdom during the course of the study.
These discussions revealed a number of areas with practical implications including: relationships
between health care providers and persons with long term type 1 diabetes; special considerations
for those living with long term type 1 diabetes, such as diabetes distress, losses related to
diabetes, and technology burnout; and how to meet the educational needs of this group along
with how to access the educational resource that this group represents. Overall, research is
limited with this population and several areas for potential future research were identified
through this study.
Relationships with Health Care Providers
As emphasized by the participants, type 1 diabetes is a long term disease, primarily
managed by the person with the disease. Because the nature of long-term type 1 diabetes is
chronic in the truest sense, the relationship between a health provider and the person with
diabetes may extend over decades. It has been suggested by these participants that such a
relationship should be deeper than what lab values reflect. That is, the health care provider in the
relationship should: 1) recognize that the person with the disease is the expert on their own

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diabetes; 2) be aware that the context of the person's life affects their diabetes management, and
therefore should have conversations beyond current diabetes control; and, 3) have a relationship
that reflects collegiality and problem solving, rather than a hierarchical relationship with the
health care provider as the 'expert'.
Special Considerations for those Living with Long Term Type 1 Diabetes
Living with long term type 1 diabetes has challenges that are unique to this population.
Some practical considerations for health care providers caring for this population are listed
below.
Diabetes distress. Although research into diabetes distress and type 1 diabetes is
relatively new (Fisher et al., 2015; Sturt et al., 2015; Vallis et al., 2016), there is some evidence
indicating that people with type 1 diabetes are more at risk of diabetes distress than those with
Type 2 diabetes. It appears that the length of having the disease may not mitigate the distress, as
these participants shared numerous examples of diabetes distress. There also appears to be a
correlation between diabetes distress and poorer diabetes outcomes (Robinson et al., 2013).
Thus, it seems to make sense to be screening for diabetes distress and addressing the results with
those with type 1 diabetes. There are several validated screening tools such as the Problem Area
in Diabetes Scale, the Diabetes Distress Scale and the T1-Diabetes Distress Scale for measuring
diabetes distress that take little time to complete (Esbitt et al., 2013; Fisher et al., 2015; Polonsky
et al., 1995). Esbitt et al. (2013) suggests that waiting room time could possibly be used for
completing brief self-report assessments.
The danger of screening is that the health care provider may feel ill-equipped to assist
with areas of distress. Esbitt et al. (2013) points out that "talking openly about the distress
related to the challenge of diabetes does not require special mental health training; empathic

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listening, engagement in thoughtful and supportive dialogue, and the use of reflective comments
are important skills for all members of the health care team" (p. 41). However, further training
in managing diabetes distress could also be beneficial for the health care provider as well as
being aware of other resources in the community to whom the person can be referred.
Losses related to type 1 diabetes. Numerous losses related to type 1 diabetes were
outlined by the participants such as choosing to travel less due to the complexities of traveling
with diabetes, not having children, not choosing a specific career (e.g., music career that would
include irregular hours and travel), and dropping out of activities they enjoyed. An early
recognition of mortality was also a loss this group experienced. No research on the losses related
to type 1 diabetes was found in the literature search. This is a subject that could benefit from
further exploration. Are the losses more prevalent for this population - those having lived long
term with type 1 diabetes? Or has the newer generation of those with type 1 diabetes
experienced these losses as well? How have these losses impacted quality of life? How have
these losses impacted diabetes management? Further research could unravel some of these
queries.
Aging and type 1 diabetes. As we age, the appearance of chronic disease seems to
become somewhat inevitable. Having type 1 diabetes did not exempt these participants from
other chronic diseases such as arthritis and adult-onset asthma. Participants suggested that
diabetes management sometimes suffered as another chronic disease took precedence over their
attention. Coordination of care by health care providers that takes the whole person into
consideration would be of benefit during this time. For example, having multiple doctor's
appointments or education appointments can cause the individual to make choices as to which

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appointments take precedence as a busy life cannot accommodate all. Coordination of the
appointments to maximize the person's time would be of benefit.
Technology as benefit or burden. Technology was identified by the participants as a
benefit that made it possible for them to take on the management of type 1 diabetes. The
introduction of self-blood glucose testing was identified by a number of the participants as the
most important technological advance during their time of having type 1 diabetes. However,
they also indicated the burden that technology imposed - adding to the financial burden and the
unrelenting demands of diabetes.
Adoption of technology for diabetes has been slow, with most people with type 1
diabetes adopting self-blood glucose monitoring (99%) thirty some years after the initiation of
this technology (Gonder-Frederick et al., 2016). Although this technology has reached almost all
of those with type 1 diabetes, other technologies such as the insulin pump and continuous
glucose monitoring are not being adopted at the same rate. As suggested by Gonder-Frederick et
al. (2016), adoption of technology is not just a function of the person's understanding the benefit
or objective utility, but rather needs to take into account "subjective perceptions" (p. 578) such as
the time constraints affiliated with the technology.
Participants in this study identified two barriers to adoption of technology: cost and
convenience. Two actions can be identified from these barriers. First, lobbying needs to occur
to make technology available to people with diabetes at an affordable cost. Health care providers
can join their voice with organizations such as Diabetes Canada and the Juvenile Diabetes
Research Foundation to lobby government to provide support for those with type 1 diabetes to
incorporate technology into their management. For example, eight provinces in Canada cover
the cost of an insulin pump for those between the ages of 17 and 25 (depending on the province)

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(Canadian Diabetes Association, 2015, p. 31). One wonders what happens when the person
reaches the age of the limit of coverage – must they give up the pump due to cost? This question
was asked by two of the participants who are going to require replacement pumps but are living
on retirement income. A technology solution, the insulin pump, has worked well for them for
many years but may now become cost prohibitive. Many health care providers may be unaware
of the limitations of coverage and could have a strong voice in advocating for improved
availability of these technologies. Furthermore, technology research needs to incorporate human
factor research. As new technologies are developed, participants with type 1 diabetes need to be
included to provide insights about the psychosocial barriers that may impede adoption of the
newer technology.
Diabetes Education
Two implications arose from discussions about diabetes education with the participants:
1) that the participants are no longer involved in formal diabetes education, and 2) that those
with long term type 1 diabetes have experience that could benefit the newly diagnosed.
Formal diabetes education. Two of the participants had been certified diabetes
educators in the past. One is now retired and the other did not feel the credentials made him
more attractive to the person with diabetes - rather the fact that he had diabetes made him a more
credible source of information, so he let his certification lapse. None of the group has a formal
relationship with diabetes education now, though they had learned about diabetes at the
beginning of their journey through the classic face to face diabetes education. All of the
participants continue to seek information about type 1 diabetes, especially by querying new
developments via internet searches, asking the endocrinologist, or through informal relationships
with diabetes educators.

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It is difficult to know whether this group needs to be or should be supported by formal
diabetes education. None of the participants seemed to desire it. However, it seems as if this
group, those with long term type 1diabetes, are somewhat lost to diabetes education, only
plugging back into the system during a crisis such as a hospital admission. More research is
required to determine how best to meet the educational needs of this population. As most
indicated the internet was often a source of information, it would seem logical to have them
connected to local diabetes education through websites, chat rooms, and even text messaging.
Tapping into the expertise. The participants in this study were able to share expertise in
diabetes management that had extended forty plus years. During the discussion they shared
numerous examples of wisdom they would share with the person learning to deal with a new
type 1 diabetes diagnosis.
Several instances of health coaches have been integrated into diabetes health centres as
pilot projects (Foundation Pour La Santé Medavie Health Foundation, Canadian Diabetes
Association, & New Brunswick, 2014; McGowan, 2017). However, the focus is on type 2
diabetes and/or preventing diabetes. More research is needed to consider how to integrate the
wisdom that persons with long term type 1 diabetes have into supporting the person newly
diagnosed with the disease.
Chapter Summary
The information provided by eight individuals with type 1 diabetes for a duration of 40
years or more has been developed into implications for practice. Four themes were identified
that identify the barrier and facilitators to living well with the disease. The barriers and
facilitators were, to some extent, two sides of the same coin. They described ways in which they
regularly accommodate and battle the disease, how technology and treatment can be both a

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convenience and a constraint, how they move between self-reliance and reliance on others, and
how they draw from external and personal knowledge in order to live well with type 1 diabetes.
The themes were then developed into implications for practice for the health care team working
with people with long term type 1 diabetes. Each recommendation was considered through the
lens of moral defensibility, disciplinary relevance, pragmatic obligation, contextual awareness,
and probable truth. Although the limitations of the study (a small sample and fairly homogenous
respondents) need to be recognized, it also should be noted that the strength of the study was
providing a voice for this particular population, which does not seem to be present in existing
literature. Further research with this population would strengthen the implications for practice.
Specifically, further research is needed on diabetes distress, losses experienced due to diabetes,
how to meet their educational needs, and how to tap into their expertise for the benefit of those
with type 1 following them.
Conclusion
Living well for the long term with type 1 diabetes is a multifaceted and difficult task.
Eight participants willingly shared their journey with diabetes and expressed times of triumph
and times of difficulty. Type 1 diabetes is a demanding disease, but these participants described
facing the challenge with an overall positive attitude. This is not a disease that can be separated
from the stuff of living and each participant made that clear. It is an unavoidable part of them,
and they daily try to keep it where it belongs, a part of life, but not all of life. Their rich stories
and insights are valuable for health care professionals and for others wanting to learn how to live
well with type 1 diabetes.

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Appendix A – Literature Search Decision Tree
Search terms: "type 1 Diabetes" OR "diabetes mellitus, type 1" AND "life experience" OR
"living with"
Limiter: years 2000 to present
Search engines: CINAHL, MEDLINE, Google Scholar, and the Canadian Journal of Diabetes.

*Four 2016 articles were added to the Literature section of the paper following the development
of the Findings Chapter and prior to the development of the Discussion Chapter.

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Appendix B - Recruitment Poster

99

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Appendix C - Recruitment Letter
On TWU letterhead
Living Well with Long Term Type 1 Diabetes
Date
The person who provided you with this letter believes you may be interested in taking part in the
research study Living Well With Long Term with Type 1 Diabetes. This study is being
conducted by Donna Epp, RN, BScN, CDE as a component of her Master of Nursing education
at Trinity Western University.
What is the study about?
The purpose of this study is to learn about what it is like to live with type 1 diabetes for forty
years or more; what has helped you live well and what has hindered you living well.
Would the study be a good fit for you?
This study might be a good fit for you if you were diagnosed with type 1 diabetes forty or more
years ago.
If you participate, what will you be asked to do?
If you agree to be in this study, you will be asked to take part in a 1 to 2-hour interview on living
long term with diabetes. The time and place of the interview will occur will be mutually agreed
upon between yourself and the researcher. The interview will be audio taped and the researcher
may take notes during the interview. Once the researcher has completed analysis of all the data,
she may ask for your thoughts on the results that have come out of the interviews.
How can you join this study?
If you would like to be a part of this study or have further questions, please contact Donna Epp
[personal information removed]
If you have concerns about the study or would like to know more about Trinity Western
University, please contact my supervisor Dr. Sonya Grypma, Trinity Western University at (604)
888-7511 ext 3283 or email Sonya.Grypma@twu.ca
Participation is completely voluntary. Thank you for considering this opportunity to take part in
this study.

Donna Epp
Principal Investigator

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Appendix D - Email for Canadian Diabetes Association Listserve
Subject line: Seeking participants for research study
Living Well with Long Term Type 1 Diabetes
You are receiving this email because you are a member of the Canadian Diabetes Association
and live in a catchment area of 250 kilometres surrounding Brandon MB.
Donna Epp, a Master of Science in Nursing student at Trinity Western University is seeking
participants for her research study. This study is about learning what it is like to live for forty
years or more with type 1 diabetes; what has helped you live well and what has hindered you
living well. You would be eligible for this study if you were diagnosed with type 1 diabetes 40 or
more years ago.
If you agree to be in this study, you will be asked to take part in a 1 to 2-hour interview on living
long term with diabetes. Once the researcher has completed analysis of all the data, she may ask
for your thoughts on the results that have come out of the interviews.
If you are interested in participating or have any questions about the study, please email
[personal information removed]
If you have questions about the study or about Trinity Western University, please contact my
supervisor Dr. Sonya Grypma, Trinity Western University at (604) 888-7511 ext 3283 or email
Sonya.Grypma@twu.ca
Participation is completely voluntary. Thank you for considering this opportunity to take part in
this study.
Donna Epp
Principal Investigator

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Appendix E - Interview Questions and Prompts
1. Tell me about the experience of being diagnosed with type 1 diabetes.
Prompts:
How old were you?
Do you remember what was happening at the time?
How did your family react?
How did you feel about it?
When did it sink in diabetes wasn't going to go away?
2. What does “living well” with diabetes look like in your life?
Prompts:
Can you describe one time or experience when you considered yourself to be living well
with diabetes?
3. If you think back over the years, when did diabetes challenge you the most and why?
Prompts:
What was happening at that time?
Has diabetes stolen anything from your life?
4. Now think back over the years and tell when diabetes was not a challenge or even a time
when you felt diabetes was a positive in your life and why?
Prompts:
What was happening at that time?
Has diabetes added anything positive to your life?
5. How has your experience of living with diabetes changed over the years?
Prompts:
What was it like to live as a child with diabetes? An adolescent? A young adult? A
middle aged adult? An older adult?
6. What do you wish your health care providers knew about what it's like to live with
diabetes?
7. What do you wish your family members knew about living with diabetes?
8. What has been your experience with diabetes education?
Prompts:
Have you ever gone?
What kept you going? Or, why did you stop going?
9. How could diabetes education meet your needs at this age? In the future?
10. What has been your experience with the medical system? The good? And the not so
good?
11. Knowing what you know now, what advice would you give to children, their family, the
school, and community members re: what to expect from diabetes?
12. What do you wish you had known earlier?
13. Is there anything we haven't talked about that you would like to share about living with
diabetes for so many years?

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Appendix F - Debriefing Script
Living Well With Long Term Type 1 Diabetes
Principal Investigator: Donna Epp, Thesis, Masters of Nursing Student, School of Nursing,
Graduate Program, Trinity Western University.
[personal information removed]
This research is part of a Thesis Capstone Project for the Master of Science in Nursing Degree.
Thank you so much for your participation in this study.
Is there anything you would like to say about what it was like to participate in this interview?
What do you think you gained from this experience?
Your participation is very important to this study to help us understand living well with long
term type 1 diabetes.
Do you have any other question?

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Appendix G - Consent Form
Living Well with Long Term Type 1 Diabetes
Principal Investigator: Donna Epp, RN, BScN, CDE, Thesis research for Masters of Science in
Nursing Program, Trinity Western University, [personal information removed].
Supervisor: Dr. Sonya Grypma, Dean, School of Nursing, Professor of Nursing. Trinity Western
University at (604) 888-7511 ext 3283 or email Sonya.Grypma@twu.ca
This research is part of a Capstone Project submitted in partial fulfillment of the requirements for
the degree of Masters of Science in Nursing at Trinity Western University.
Purpose
The purpose of this study is to explore the experience of living with type 1diabetes for forty
years or more; what has helped you live well and what has hindered you living well.
Procedures
If you agree to be in this study, you will be asked to take part in a 1 to 2-hour interview on living
long term with diabetes. The time and place of the interview will be mutually agreed upon
between yourself and the researcher. The interview will be audio taped and the researcher may
take notes during the interview. Once the researcher has completed analysis of all the data, she
may ask for your thoughts on the results that have come out of the interviews. This may take up
to 30 minutes.
Potential Risks and Discomforts
It is not anticipated that there will be any risks or discomforts with this project. There is the
potential you may become uncomfortable speaking about difficulties related to diabetes
management.
Potential Benefits to Participants and/or Society
There are no benefits to you participating in this study. Your participation may benefit others by
increasing their understanding of what it is like to live long term with a chronic illness.
Confidentiality
Any information that is obtained in connection with this study and that can be identified with you
will remain confidential and will be disclosed only with your permission or as required by
law. Data will be collected anonymously and names will not be linked with any information.
The data from this study will be kept private. In any report made public we will not include any
information that will make it possible to identify you. The results of this study may be published
in professional or lay journals, but your name and identity will not be revealed. Research records
will be kept in a locked file; only the researcher and her thesis committee will have access to the
records. The audio-recordings of the interview will be deleted after the interview has been
transcribed. All of the documents related to this project will be shredded and all computer files
will be deleted after 5 years.

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Appendix G - Consent Form (continued)
Consent
Taking part in this study is completely voluntary. You may decide to not answer questions or
discontinue the interview at any time. If you decide to take part, you are free to withdraw any
time until the data has been combined and it is no longer possible to identify your responses from
others. If you decide not to participate, there will be no penalty to you.
Contact for Information about the Study
If you have questions or desire further information with respect to this study, you may contact
Donna Epp at [personal information removed]. You can also contact Donna Epp's supervisor, Dr.
Sonya Grypma, Trinity Western University at (604) 888-7511 ext 3283 or email
Sonya.Grypma@twu.ca
Contact for Concerns about the Rights of the Subjects
If you have any concerns regarding your treatment or rights as a research participant, you may
contact Ms. Sue Funk in the Office of Research, Trinity Western University at 604-513-2142 or
sue.funk@twu.ca
Signatures
Your signature below indicates that you have had your questions about the study answered to
your satisfaction and have received a copy of this consent form for your own records.
Your signature indicates that you consent to participate in this study and that your responses may
be put in anonymous form and kept for further use after the completion of this study.
Your Signature _____________________________ Date ________________________
Your Name (printed) ____________________________________________________________