Original Article

Yonago Acta Medica 2017;60:01–08

Structure of Resilience among Japanese Adult Patients with Type 1 Diabetes: A
Qualitative Study
Ikuko Nishio and Masami Chujo

Department of Adult and Elderly Nursing, School of Health Science, Tottori University Faculty of Medicine, Yonago 683-8503, Japan

ABSTRACT

requires daily insulin administration to manage.1 Patients with T1D require lifelong self-care, including
daily management of blood glucose levels to maintaintheir health and prevent future complications. Thus, it
is exceedingly important that patients with T1D modify
their behavior after diagnosis and learn to self-manage
their condition.
Good self-managers can be defined as individuals
who have learned the skills to cope with their illness,know how to continue with their daily activities, andcan regulate the ever-changing emotions stemming fromtheir chronic illness.2 Self-management can be difficultfor patients with T1D, because it comes with the experience of physical, emotional, and social distress due to theneed to incorporate its management into their everyday
life and because patients must often communicate theirneed to self-manage to co-workers and supporters. Notably, while some T1D patients struggle to manage such
distress related to their self-management, others excel
in doing so. This phenomenon is evident across the academic, social, and developmental domains. Those who
excel in dealing with the distress related to their diseasecan be considered “resilient,” and such individuals are
the focus of the present study. Resilience has been studied both domestically and internationally, particularly in
relation to the support of “positive health” approaches.
Currently, it is important to promote knowledge of resilience among both the research and lay populations.
Previous studies of patients with T1D focused on thenegative psychological aspects of their disease, such as
anxiety, depressive symptoms, or feelings of struggle.3–6
However, we focused on a positive aspect—resilience.
Resilience refers to the capacity to deal with, overcome,learn from, or be transformed by life’s inevitable adversities.7–10 For instance, resilient youths can overcome
challenges expected to derail them from their progressand demonstrate competence at or above common levelsof functioning in doing so.11–13 People with chronic diseases have noted how their diagnosis helped them recognize their own resilience—namely, they felt able to tap

Background Resilience is the process of overcoming
adversities and difficulties. We clarified the structure ofresilience and its motivational power among adult Japanese patients with type 1 diabetes. This is likely to help
ensure effective nursing support to empower patientswith diabetes and help them recuperate and improvetheir personal lives.
Methods Participants were 17 patients with type 1
diabetes, and data were collected using semi-structured
interviews. Participants shared their experiences of coping with self-management and diabetes control issues,
the meaning of living with diabetes, and their support
from family and friends since their diagnosis. Glaser’s
grounded theory was used to analyze the data and theresults were used to create a new model of resilience fortype 1 diabetes.
Results Five categories were extracted: “sufferingfrom a guilty conscience,” “suffering from an insulin-dependent body,” “social disability,” “a driving force
to advancement,” and “possessing a strategy to live withthe disease.”
Conclusion The five categories formed two stages:
preparatory resilience and resilience formation. Oncepatients recognized the presence of empathetic others,
they could obtain better disease comprehension and cooperation. Recognizing this support system served as a
“driving force to advancement” and was termed the “resilience battery.” Through the resilience battery, patients
shifted from preparatory resilience to “resilience formation,” or acquiring “a strategy to live with the disease.”
To forge patient resilience, nurses should encourage
disease comprehension and cooperation among patients’significant others. We further propose that high-quality
nursing care would involve supporting patients’ innerresilience.
Key words adult; Japanese; qualitative study resilience;

structure; type 1 diabetes
Diabetes is a chronic disease that currently affects over
3.16 million people in Japan. The disease is ordinarily
classified into two types, type 1 (T1D) and type 2. In
Japan, only around 5% of all adults have T1D. T1D ischaracterized by deficient insulin production and thus

Corresponding author: Ikuko Nishio, RN, PhD
ikurin@med.tottori-u.ac.jp
Received 2016 October 24
Accepted 2016 December 14
Abbreviation: T1D, type 1 diabetes1

I. Nishio and M. Chujo

those who agreed to participate contacted the researchers for further information.

into sources of strength and be resourceful in ways they
had never thought possible. Simultaneously, one of life’s“curveballs,” or a series of curveballs, can leave anyone
feeling depleted. Therefore, patients with T1D might
benefit from resilience-enhancing interventions provided
by caregivers.
There is very little qualitative research available
on the resilience of people diagnosed with T1D. One
notable study is that by Hilliard et al.,11 who examined
resilience in relation to T1D management and control
in adolescents, and constructed a theoretical model ofthe same. So far, however, no researcher has studied this
topic in Japan.
We clarified the structure of resilience and its motivational power among adult Japanese patients with
T1D. This should be of great value for ensuring effective
nursing support to empower T1D patients and help themrecuperate and improve their personal lives.

Ethical considerations

This study was approved by the ethics committee of
Tottori University (Record Number 2307, January 2013).
Informed consent was obtained from all patients using
the procedure approved by the ethics committee, andthe confidentiality of the participants’ information wasprotected. Furthermore, participants could stop the interview at any point and refuse to answer any questions.
Participants were given pseudonyms to ensure their confidentiality and all data were stored securely during theanalysis process.
Data collection

Data were collected from the 17 patients with T1D
between July 2013 and October 2015 via in-depthsemi-structured interviews in the clinic waiting rooms.
We conducted all interviews using a standardized interview schedule focusing on patients’ diabetes experience.
The researchers, all of whom have abundant experience ininterviewing, designed the interview guide. Specifically,
participants were asked to share their experiences, since
their diagnosis, of coping with self-management and diabetes control issues, the meaning of living with diabetes,
and their support from family and friends. Initially, we
informed participants of the topics and then asked themto freely reflect on and discuss their experiences of living with T1D. Follow-up questions were posed to obtain
more detailed descriptions or explanations. Interviews
were audio-recorded and transcribed verbatim, and thenstored for analysis.

MATERIALS AND METHODS
Design

We used a qualitative, inductive design. To ascertain the
structure of resilience in adults with T1D, we employed
the grounded theory method.14–15 This method was suitable because it involves exploring processes and generating new understandings of them from available data, andallowed us to use participants’ own words to understandthe effects of a T1D diagnosis on their meaning of resilience.
Participants

Inclusion criteria were being a Japanese speaker with
T1D and being aged 20 years or over. We secured
enough participants to be able to analyze development of
T1D in adult patients. All of the participants resided in
Tottori Prefecture, Japan, and were recruited from twodiabetes outpatient clinics that specifically served adults
with T1D. All of the patients were recruited from theshort-term-care wards in these clinics. Approximately
5% of patients who visit these wards have T1D withhypoglycemia or hyperglycemia, and nurses in thesewards provide self-care management and group therapy
with the goal of discharge. We recruited 17 adults with
T1D who had formed resilience on the recommendationof their health professionals. Participants were recruiteduntil data saturation occurred (i.e., when no new findingsor themes were extracted from newly collected data); we
employed snowball sampling (i.e., having participants
recommend other participants) because we found it difficult to identify appropriate and willing participants on
our own. The study details were explained to all clinic
patients, after which they were invited to participate;

Data analysis

We employed a constant comparative analysis while conducting the semi-structured interviews of patients with
T1D. Data were analyzed using Glaser’s grounded theory approach.14–15 Grounded theory uses constant comparative analysis comprising simultaneous interviewing, transcribing, and analysis until data saturation isreached. The constant comparison involves concurrently
asking questions, creating memos and diagrammaticrecords, and reading literature from data collection commencement until data saturation.14–15 Before coding eachinterview, the first author repeatedly listened to the interview tape and read the typed transcripts completely, tofully understand the raw data. Next, we performed lineby-line in vivo coding and then compared derived codes
according to their differences and similarities and sorted
them into categories and subcategories. Subsequently,
we identified the linkages among these categories and2Structure of resilienceFig. 1. The structure of resilience among Japanese adult patients with type 1 diabetes. This figure shows change from ‘Preparatory Resilience’ to ‘Resilience Formation’ through ‘Resilience Battery.’

RESULTSsubcategories, which helped in determining the core
category (the category to which all other categories andsubcategories are related) upon completion of the 15th
interview. We used these results to create a new modelof resilience for T1D (Fig. 1). We also translated all transcripts into English and performed the same coding andanalysis as with the Japanese transcripts; the results did
not differ.
With regard to the trustworthiness, we enhanced
the credibility and clarity of our results by systematically presenting the verbatim records of the interviews tosupervisors familiar with chronic illness management
and qualitative research. Furthermore, to improve theconfidence, the analysis results were continually verified
among the cooperating researchers.16

Participants

Table 1 shows the study participants’ basic attributes.
Overall, there were 3 men and 14 women. The mostcommon age group was 30–40 years, and the most had
lived with T1D for less than 5 years. Each patient wasinterviewed once or twice, with each interview lasting
60–75 minutes.
The resilience of Japanese adult patients with type1 diabetes

The core category was “resilience of Japanese adultpatients with T1D.” One hundred seven codes were obtained, from which we derived five categories and nine
subcategories. For each category, we have provided astoryline along with a description. The patients’ stories
3

I. Nishio and M. Chujo

They make me wish I had never gotten this disease.
(Participant E)

Table 1. Demographic characteristic of the 17 study
participants with type 1 diabetes
Participant characteristicsn

Suffering from an insulin-dependent body

GenderFemale14
Male
3
Employment status
Full tim
7
Part time3
Unemployed7
Age groups (years old)
20–30
2
31–40
7
41–50
3
51–60
2
> 60
3
Time living with type 1 diabetes (years)
<5
8
6–10
7
11–20
1
> 21
1
LivingAlone
6
Cohabiting
11
Insulin therapy
MDI
13
CSII
4
HbA1c† (NGSP) (%)
5.3–9.0 (7.2 ± 1.03)†glycated hemoglobin.
CSII, continuous subcutaneous insulin infusion; MDI, multiple
daily injection; NGSP, National Glycohemoglobin Standardization
Program.

This category comprised three subcategories: “sufferingfrom various bodily changes,” “a body and mind that are
unable to go out,” and “resistance to injections.” Patients
struggled from bodily changes resulting from their T1D,
including (i) suffering from unpredictable hypoglycemia,(ii) worry over bodily harm from injections, (ii) distressthat the current condition’s lack of control will persist,and (iv) feeling disease-specific bodily abnormalities.
Additionally, the disease reduced patients’ frequency ofgoing out of their homes for such reasons as (i) irritationin finding places to administer the shot and (ii) numerous problems with going out. Most patients expressed
resistance to insulin injections, stating that (i) injection
brands them as being sick and (ii) they are unable to accept injections.
I hated giving myself injections. I hated having
to go to the bathroom to give myself an injection
during work. I couldn’t work because of hypoglycemia. (Participant B)
It’s bothersome when you’re eating out, to have to
excuse yourself to go to the bathroom. (ParticipantA)
Social disability

This category comprised the subcategories of “prejudiceand special treatment” and “the shackles of the disease.”
The former referred to feelings of prejudice or excessive
concern from others, with patients reporting (i) lost social ties due to the disease’s stigma, (ii) embarrassment
from the unwanted concerns from others, (iii) significant
harm from what others say, (iv) others’ lack of consideration for the disease, and (v) difficulty in explaining thedisease to others. The latter, in contrast, referred to thesocial disability of not being treated the same as healthypeople and how the disease interfered with their social
lives. They reported (i) “I cannot work because of thedisease” and (ii) “I cannot administer injections duringwork.”
When I first develop systems of type 1 diabetes, I
told people (around me) about it. But I gradually
shut down because people said things that hurt myfeelings when I mentioned the disease. I learned tohide my condition ever since. (Participant Q)
People (around me) feel they shouldn’t invite meout. They ask me if I could eat this and that and I
say, yes, of course! So I’m more proactive and invite them to first. (Participant D)This (type 1 diabetes ) doesn’t give you a good im-

are presented in italics. Examples of the individual codes
are preceded by parenthetical Roman numeral markers,
such as (i), throughout the section.
Suffering from a guilty conscience

This category contained only one subcategory: “overreaction to the disease,” which referred to feelings such as(i) excessive remorse about one’s past lifestyle, (ii) painthat restricts everyday life and (iii) a feeling of there being no escape from the disease, caused by the development of T1D.
Compared to the time before I developed symptoms(of type 1 diabetes), I see fewer friends and tend tostay home more. I find it bothersome to go (out). I
tend to get hungrier when I go out and want to eat.
I might as well stay home. (Participant P)
You can’t help things that have already become reality, and I do think this is something that will continue until I die. But the requirement for long-term
treatment, the lack of a cure... It’s those things.
4Structure of resilience

whenever something happens, and it’s over. (Participant P)

age. So, I’m afraid I’m at a disadvantage. (Participant P)
A Driving Force to Advancement

Storyline

This category comprised the subcategory, “the presenceof supportive others.” Patients expressed a desire toreconstruct negative feelings as painful and difficulty
through the understanding and cooperation of significant others and to forward, as evidenced by statements
such as (i) discovering successful people with the samedisease, (ii) deriving courage from people with the samedisease, (iii) rescued feelings thanks to family encouragement, and (iv) soliciting work colleagues’ cooperation.
With my current workplace, I mentioned that I havea disease during the interview. I wanted to work ina place where I didn’t have to hide my illness, so in
the interview I stated that I have a disease and if I’m
not hired because of that, then I don’t need to be
hired. (Participant B)
At the disease’s (diabetes) onset, I received information from the hospital—there’s this-and-thisperson who’s successful in sports (who also hasdiabetes)... Receiving that type of information, I realized that I don’t need to change…(Participant A)
When I was down (because of the disease), my husband said, ‘isn’t it rather good because you only
have to do a little extra work compared to otherpeople.’ I think he meant that I could be the sameas other people except for that work. (Participant Q)

The storyline of the five categories began with the“suffering from a guilty conscience” category. Patientsblamed themselves for the T1D, and overreacted to thediagnosis, reporting feelings of guilt, pain with limits,and being unable to escape from the disease. Simultaneously, they were “suffering from an insulin-dependentbody” that was prone to hypoglycemia and hyperglycemia after beginning insulin treatment. These initialstates generated a “social disability,” or an inability toadminister injections at work, being dismissed fromwork, and a lack of cooperation from others within theworkplace. Together, these states reflected patients’ negative experiences concerning T1D as well as their endurance of living an incurable disease that disallows interruption or abandonment of treatment. This endurance inthe face of difficulties characterized the first stage of thestructure of resilience: “preparatory resilience.”
However, once patients recognized the presence ofan empathetic family, workplace, and friends, they wereable to obtain better disease comprehension and cooperation. This recognition of a support system served as a
“driving force to advancement” and was termed the “resilience battery.” Through this resilience battery, patients
shifted from preparatory resilience into actual “resilience
formation,” wherein patients acquired “a strategy to livewith the disease”—namely, living true to themselves despite having T1D (Figure 1).

Possessing a strategy to live with the disease

This category comprised the subcategories of “confronting insulin” and “commitment to living true to oneself.”
Patients reported a willingness to view insulin positively,
reporting that they were (i) against making insulin the“bad guy” and (ii) grateful to insulin for saving lives.
Patients also reported committing to living true to themselves despite having T1D, reporting the following: (i)calmly reassessing the disease, (ii) “the disease changed
my perspective,” (iii) “pondering my life with the disease,” (iv) not hiding the disease and coming out publicly, (v) prioritizing attitude, and (vi) selecting company.
I feel it’s for better or worse. I find occasions thateven bad situations that require handling pass by
and leave me feeling like “that should do it” or “thatwill do” (Participant J)
I guess I’m careful to avoid being slandered. Like
administering injections where no one can see.
Because not everyone knows, I take care to hide it
from people’s eyes. (Participant H)
I always think that it’s the way it is and let it go

DISCUSSION
The structure of resilience formulated in this study
comprised two stages—preparatory resilience and resilience formation—bound by the resilience battery (i.e.,a support system). Overall, our results suggest that theresilience of Japanese patients with T1D comprises stages with negative and positive orientations toward theirdisease.
A major feature of the preparatory resilience stage
was a psychological state of “suffering from a guilty
conscience,” wherein the individual blamed his or her
past lifestyle or self for developing T1D. We considered
this an overreaction to the fundamental transformationof their lifestyle due to the diagnosis. Similarly, “sufferingfrom an insulin-dependent body” concerned how insulin
was a powerful reminder of their diabetes, particularly
the unpredictable occurrence of hypoglycemia resulting
from these injections and the difficulties in adjusting insulin dosage to fluctuations in daily blood glucose levels,5

I. Nishio and M. Chujo

which cultivated a feeling resistance to insulin injections. The fact that insulin adds both physical instability(i.e., glycemic control) and psychological instability(i.e., distress that the individual’s current condition will
persist and feelings of disease-specific bodily abnormalities) accords with previous reports showing thatnegative emotions such as anxiety, anger, and confusion
accompany the initial struggle to adjust insulin dosage
among newly diagnosed T1D patients.17, 18 With regard to“social disability,” patients experienced numerous socialinconveniences as a result of their disease, such as lacking a time or place to administer insulin injections or
enduring sudden episodes of hypoglycemia (which often
needed to be privately dealt with, as patients felt unable
to publicly disclose their disease in some environments).
Overall, the preparatory resilience stage of resilience
was partly characterized by the various negative andpainful experiences accompanying a diagnosis of T1D.
This accords somewhat with Celik et al.,19 who studied
disease mismanagement in patients with T1D and foundthat patients exhibited negative emotions stemming froma lack of knowledge, challenges in the treatment environment, lack of social support, and the inability to use
problem-focused coping.
Interestingly, previous studies on resilience nevermade it clear whether this period of negative perceptionof difficult and painful experiences caused by T1D wasessential to patients’ resilience. We confirmed, however,that patients’ endurance of such experiences—namely, the fact that patients did not interrupt or abandon
treatment despite their negative perceptions—did form
part of the resilience structure. Although the disease
was hard to accept, patients harbored a desire to “breakthe status quo” by persevering in their treatment. Morespecifically, rather than seeking to cure their diabetes,
patients persevered in an attempt to understand how tocope with the disease and thus were able to strengthen
their own outlook on their disease.20 This was the otherportion of the preparatory resilience stage.
The transformation from the preparatory stage of resilience to actual resilience formation was guided by patients’obtaining the understanding and support of others in theirlives (i.e., the resilience battery). Specifically, the understanding and support from surrounding others served as asupport system for the patient, which became the driving
force towards formation of their resilience. This accords
with previous reports, wherein support from surrounding
others was an element of resilience.11, 21 Similarly, previous
reports have shown that diabetes management, whichmight be difficult to accomplish alone, can be aided
by the understanding and support of others in patients’
lives, which in turn benefits patients both psychologi-

cally and physically by minimizing the occurrence of
hypoglycemia and generating optimistic feelings.22, 23This accords with our results, in that these significant others, who were typically a group of strong sympathizers, helped mitigate the challenges in diabetes management that patients experienced and provided themwith suitable emotional support, which in turn molded
patients’ resilience.
In the resilience formation stage, patients perceived
the aforementioned difficult and painful experiences
positively because of their support system. By this stage,
patients’ desire to understand how to cope had transformed into gratitude for insulin and a desire to avoid
viewing insulin as a negative aspect of their lives. We
also found that patients “selected company” and “prioritized their attitudes” to ensure that they could live true
to themselves despite their T1D, and that patients werecommitted to living with genuine intent—namely, saying and doing what they wanted. Thus, to live with theirdisease, patients recognized the necessity of the understanding and cooperation of surrounding others, which
in turn generated resilience. These results—specificallythe recognition of the need for the understanding and cooperation of others—were similar to those from a studyof resilience in T1D patients.24 In Hilliard’s study, resilience in pediatrics was defined as positive behavior andgood diabetes health outcomes; in contrast, resiliencein adults manifested as diabetes self-management anddiabetes support. As such, pediatric and adult resilienceappear to differ in their expression.
Patients had numerous difficult experiences related
to T1D. While they initially endured these difficulties,
they gradually found the strength to overcome them. We
furthermore identified several hindrances to resilience
formation in T1D patients, including misunderstanding and prejudice against the disease. This indicates
how important it is for patients to correctly understandT1D. Therefore, nurses should assess patients’ degreeof comprehension of their disease to correct any misunderstandings, as well as fully consider patients’ feelings.
Patients’ correct comprehension of the disease can help
them understand how best to live with the disease. Furthermore, through talking about their feelings with nurses, patients might become aware of how their past life
experience and experiences with the disease form thebasis of a strength for overcoming difficulties, both in
the present and future. Such nursing practices might leadpatients with misconceptions or prejudices towards T1D
to regard nurses as “sympathetic supporters” who understand their painful situations, which in turn could help
in correcting their misconceptions and prejudices. We
posit that relief from these misconceptions and prejudic6

Structure of resiliencees would enable patients to recognize the understanding
and support they receive from their surroundings andthereby to maintain good relationships with family,
friends, and colleagues, thus leading to the formation ofresilience.
Notably, T1D is a completely different disease
from type 2 diabetes, and, as such, nurses must gauge
society’s current understanding of T1D and correctthat understanding as necessary, which would help the
people who surround the patients comprehend the disease and thereby facilitate their cooperation. Rankin etal25 touched on societal support for patients with T1D,
proposing that these patients can fill social roles andoutlining the importance of societal education to avoid
limiting patients’ choice of such roles due to public misconceptions and prejudice. As such, it is important for
medical staff, particularly nurses, to tailor the patients’environments alongside patients’ surrounding others toensure that patients are able to maintain the relationships
they had with these others before developing the disease,and to avoid misconceptions, prejudice, and discrimination from marring these relationships. Indeed, family,
friends, and colleagues may not be able to support thosewith T1D because of a lack of knowledge about it. In
particular, problems in the workplace—such as dietary
restrictions and finding places to administer injections—are probably best solved through cultivating understanding among those in patients’ surroundings, rather thanhaving the patient worry about it alone. Additionally, it isimportant that we encourage active participation of not
only patients but also the families of patients in seminars
and meetings about T1D.
As described above, the assessment of and provision of nursing assistance concerning resilience among
patients with T1D is a new avenue for intervention. We
suggest that, based on our results, nurses’ support ofpatients in harnessing their inner resilience to overcome
challenges should be considered an aspect of high-quality nursing care.
Importantly, in a study on powerlessness among patients with T1D, Nishio et al.26 found that such patientsachieve a state of powerlessness after highly confusing
experiences (e.g., in their words, “wandering a tangledpath”). Going forward, we will consider the relationshipbetween powerlessness and resilience in patients with
T1D to better clarify the process of resilience formation.

We thank all patients with type 1 diabetes who participatedin this study.
The authors declare no conflict of interest.

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Acknowledgments: We are exceedingly grateful to the participants
who kindly shared their experience. We must also thank Tottori
University Hospital and Hakuai Hospital for allowing us to conduct the study, and their staff for offering us advice. This study
was funded by a Grant-in-Aid for Scientific Research © 15K11586
from the Japan Society for the Promotion of Science.

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