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Q: diabetes denial and conversion ( Answered,   2 Comments )
Subject: diabetes denial and conversion
Category: Health > Conditions and Diseases
Asked by: phlu-ga
List Price: $100.00
Posted: 11 Mar 2006 20:21 PST
Expires: 10 Apr 2006 21:21 PDT
Question ID: 706274
why are so many diabetics unwilling to manage their disease?  why are
so many essentially in denial (the ones who know they have it)? 
moreover, have there been any surveys of what it would take
productwise that would bridge the gap between denial and careful
maintenance?  if insulin pumps were smaller, cheaper, simpler for
instance...?  Is their something that has been shown to get diabetics
to change their ways.  studies?

Request for Question Clarification by umiat-ga on 11 Mar 2006 22:58 PST
Hello, phlu-ga!
 Are you seeking information on medical devices, only? Or, are you
interested in research studies concerning educational intervention,
psychological issues, rapport between doctor and patient, etc. as
factors affecting self-management?
 I haven't run across any studies linking types of insulin delivery
products with better self-management. However, there are numerous
research studies highlighting other factors (as I mentioned above)
which seem to be contributing to the gap between acceptance and
self-care. Would these studies be of interest?
 Please let me know your thoughts via the "Clarify Question" feature.
Subject: Re: diabetes denial and conversion
Answered By: umiat-ga on 14 Mar 2006 13:24 PST
Hello, phlu-ga! 

The greatest bridge between denial of disease and self-management
appears to be a combination of factors: proper education, behavioral
strategies, support from family and friends (especially among
adolescent patients), outpatient treatment, a degree of rapport and
agreement between the patient and doctor concerning treatment and
management, and an individual's feeling of self control about managing
the disease. Attention to all of these factors can help to promote a
greater willingness to take responsibility for self-management of

 While there are new glucose monitoring and insulin delivery products
coming on the market all the time, no one product is applicable for
use with every diabetic patient. No matter how small a delivery device
or how minute the pinprick, none of these products are especially
pleasant or convenient, so the real key to self-management lies more
with the attitude of the patient as opposed to the device.

 The following references address each of the issues mentioned above.


The following paper provides an excellent overview of the complex
emotions and behaviors that accompany the harship in accepting the
serious nature of diabetes. I have included a few excerpts but it is
worth reading the paper in it's entirety.

From "Controlling diabetes, controlling diabetics: moral language in
the management of diabetes type 2," by Dorothy Brooma and Andrea
Whittaker. Social Science & Medicine.


"Contemporary management of diabetes places heavy emphasis on control,
particularly control of blood sugars and of food consumption.
Interviews with people living with diabetes type 2 show how identity
and social relationships are negotiated through what is often a
contradictory language of control, surveillance, discipline and
responsibility. People frequently discuss diabetes-related behaviour
in terms that position themselves or others as disobedient children,
or as wicked or foolish adults. These references occur alongside
appraisals of the physical and social complexity of ??compliance??
with diabetic regimes and in some instances the dif.culty of achieving
effective control over blood sugar levels."

From the Conclusion:

"Living with diabetes involves many aspects of people?s daily lives,
and imposing control can be a multifaceted and challenging process.
Consequently, the management of blood sugar is not just a technical
matter, but a complex and dynamic personal task for people with
diabetes. Close inspection of lay discourses about diabetes reveals
the diffculties, contradictions and occasional unintended consequences
of the frequent use of exonerating language that diabetics deploy to
resist spoiled identity. The narratives of these people living with
diabetes display a constant struggle to integrate and ??make sense of
the disorder.??  They yearn to order the chaotic linkages between
their endlessly mobile blood sugar readings, the physical ways in
which diabetes is subjectively experienced, and how they live their

"The frequent references to control and its multiple meanings thus
form a central part of the moral discourse surrounding diabetes.
Efforts to protect themselves from the stigmatising potential of
diabetes may inadvertently undermine the agency of people who are
already coping with a demanding discipline and a potentially disabling
or life-threatening disease. They might be more effectively supported
by discourses and services that strive to restore agency without
implicit or explicit judgement, and that dispute the
common cultural currency that blames people for their health problems."


From "Diabetes Watch: Why We Shouldn't Overlook Psychosocial Issues In
Patients With Diabetes," By Thomas Zgonis, DPM, and Gary Peter Jolly,
DPM. Podiatry Today.

"As with any disease, the initial response from a patient after
diagnosis may be denial, mood swings, anger and disbelief."

"This internal battle can, at times, be devastating. Physicians might
be surprised that their patients? denial and resistance to treatment
may be due to their withdrawl from reality and an inability to make
emotional adjustments in order to cope with their disease. The fear of
potential limb loss, the risk of blindness and the possibility of
lower extremity amputation may precipitate a major depression,
dysfunctional family relationships and, ultimately, the avoidance of
healthcare altogether."

"Patient education, the prevention of complications and adequate
glycemic control are classically regarded as the three pillars in the
management of diabetic patients. However, treating physicians should
not overlook the management of the fears and anxieties that often
accompany chronic diseases."


Another symptom that goes hand in hand with denial is called "diabetes
burnout." For an enlightening "chat" on this overwhelming feeling of
inability to manage and cope, please read the following:

"Diabetes Burnout," With Dr. William Polonsky

"Living with diabetes can be tough. In fact, it can be downright
burdensome and frustrating. Diabetes is not just a simple matter of
eating right or taking one's medications properly. Diabetes is often
an emotional struggle as well. Addressing and overcoming the emotional
stresses of diabetes may be one of the most important steps that can
be taken in order to manage the illness successfully. Unfortunately,
it is too easy for both patients and doctors to neglect this
"personal" side of the disease. Yet how can you effectively manage
diabetes if you aren't giving proper attention to your own difficult
thoughts and feelings about the disease?"

"In this chat session, we want to focus on the emotional side of
diabetes, especially that feeling known as "diabetes burnout". Burnout
is what happens when you feel overwhelmed and defeated by diabetes and
by the frustrating burden of diabetes self-care. People who have
burned out realize that good diabetes care is important for their
health, but they just don't have the motivation to do it. At a
fundamental level, they feel at war with their diabetes--and they are

Read on.....


Also read"

"Psychosocial Barriers to Diabetes Self-Management and Quality of
Life." Diabetes Spectrum Volume 14, Number 1, 2001


"Behavioral Science in Diabetes: Contributions and opportunities."
Diabetes Care 22:832?843, 1999

** See Table 1 - Factors supporting and interfering with chronic
disease comanagement at each level of influence.


Knowledge, social support and self-efficacy are crucial to self-management

From "Testing a conceptual framework for diabetes self-care
management." Sousa VD, Zauszniewski JA, Musil CM, McDonald PE,
Milligan SE. Res Theory Nurs Pract. 2004 Winter;18(4):293-316.

"Those with a higher score in social support had greater self-care
agency and better diabetes self-care management, and those with
greater self-efficacy had better diabetes self-care management. In
addition, self-care agency mediated the effects of diabetes knowledge
on self-efficacy and the effects of social support on diabetes
self-care management. Self-efficacy mediated the effects of self-care
agency on diabetes self-care management. Furthermore, the linear
combination of diabetes knowledge, social support, self-care agency,
and self-efficacy, taken together, positively affected diabetes
self-care management. Enhancing an individual's diabetes knowledge,
social support, self-care agency, and self-efficacy may be a strategy
which can promote better engagement in diabetes self-care."


From "Self-efficacy: strategy for enhancing diabetes self-care."
Hurley AC, Shea CA. Diabetes Educ. 1992 Mar-Apr;18(2):146-50.

"This study found that the concept of self-efficacy was associated
with diabetes self-care behaviors for individuals with complex insulin
requirements. Individuals with higher levels of self-efficacy were
better able to manage their diabetes self-care. Diabetes educators are
encouraged to incorporate the self-efficacy concept into teaching
programs to help individuals develop their own strategies for
long-term management of their diabetes."


"Correlates of self-efficacy in diabetes self-care among Hispanic
adults with diabetes." Bernal H, Woolley S, Schensul JJ, Dickinson JK.
Diabetes Educ. 2000 Jul-Aug;26(4):673-80.

PURPOSE: "The purpose of this study was to examine factors associated
with increased diabetes self-efficacy among insulin-requiring Hispanic
adults with diabetes."

RESULTS: "Respondents gave low to average self-efficacy ratings on
their ability to manage all aspects of their disease. Behaviors that
required problem solving in changing circumstances received the lowest
scores. Attending diabetes classes and having home nursing visits were
associated with an increased sense of self-efficacy, particularly as
it related to diet and insulin. English-speaking ability was
associated with a general sense of self-efficacy in managing diabetes

Education and Training 

From "Group-Based Education Improves Diabetes Self-Management, Studies
Find." Diabetes News. 18 May 2005
"Patients with type 2 diabetes who participate in group education
programs to manage their disease show measurable improvement and
require less medication, according to a systematic review of current
evidence."  (Read further...)


From "Group based training for self-management strategies in people
with type 2 diabetes mellitus." T Deakin, CE McShane, JE Cade, RDRR
Williams. The Cochrane Database of Systematic Reviews 2006 Issue 1

"Group-based training for self-management strategies in people with
type 2 diabetes is effective by improving fasting blood glucose
levels, glycated haemoglobin and diabetes knowledge and reducing
systolic blood pressure levels, body weight and the requirement for
diabetes medication."


From "Increasing Diabetes Self-Management Education in Community
Settings. A Systematic Review. Am J Prev Med 2002;22(4S)

"Self-management is critical to the health of the person with
diabetes, and the objectives for ideal self-management interventions
in diabetes are clear: behavioral interventions must be practical and
feasible in a variety of settings; a large percentage of the relevant
population must be willing to participate; the intervention must be
effective for long-term, important physiologic outcomes as well as
behavioral endpoints and quality of life; patients must be satisfied;
and the intervention must be relatively low cost and cost-effective.
Evidence shows that DSME is effective in improving glycemic control
when delivered in community gathering places for adults with type 2
diabetes and in the home for children and adolescents with type 1


More than just education is necessary:

See "Closing the gap between literature and practice: evaluation of a
teaching programme (in the absence of a structured treatment) on both
type 1 and type 2 diabetes." Matteucci E, Giampietro O. Diabetes Nutr
Metab. 2003 Oct-Dec;16(5-6):298-305.

Relationship between Patient and Physician is important

From "When do patients and their physicians agree on diabetes
treatment goals and strategies, and what difference does it make?"
Heisler M, Vijan S, Anderson RM, Ubel PA, Bernstein SJ, Hofer TP. J
Gen Intern Med. 2003 Nov;18(11):893-902.

OBJECTIVE: "To assess the extent to which patients with type 2
diabetes agree with their primary care providers (PCPs) on diabetes
treatment goals and strategies, the factors that predict agreement,
and whether greater agreement is associated with better patient
self-management of diabetes."

CONCLUSION: "Although patients and their PCPs in general had poor
agreement on goals and strategies for managing diabetes, agreement was
associated with higher patient self-efficacy and assessments of their
diabetes self-management. This supports the hypothesis that enhancing
patient-provider agreement on both overall treatment goals and
specific strategies to meet these goals may lead to improved patient


Also read "The Relative Importance of Physician Communication,
Participatory Decision Making, and Patient Understanding in Diabetes
Self-Management." J Gen Intern Med 2002:17:243-252.

The importance of family and peer support

From "Adolescents' perceptions of physicians, nurses, parents and
friends: help or hindrance in compliance with diabetes self-care?" 
Journal of Advanced Nursing. Volume 27 Page 760  - April 1998

"Although compliance with self-care amongst adolescents with diabetes
is known to be problematic, this issue has rarely been examined from
the perspective of young diabetics themselves. The purpose of the
study was to explore how adolescents with diabetes perceived the
actions of physicians, nurses, parents and friends in relation to
compliance with self-care. Fifty-one young diabetics aged from 13 to
17 responded to a questionnaire concerning compliance and were
interviewed on the topic of compliance. Interview data were analysed
by content analysis. The categories obtained were quantified and the
relationship between compliance and the actions of physicians, nurses,
parents and friends analysed by cross-tabulation. Interviews with 51
adolescents showed that the actions of physicians, nurses and parents
described as motivating were associated with better compliance. Good
compliance was also more evident when parental actions were perceived
as accepting. Young diabetics whose friends offered silent support, or
who viewed friends as irrelevant, were more likely to report good
compliance. In contrast, physicians' actions described as
routine/negligent, disciplined control by parents, and domination by
friends were linked with poor compliance."


"Teaching families to work together improves diabetes management for
low income kids, UMHS study finds." University of Michigan Health
System. May 3, 2004.

"When kids with diabetes approach the teenage years, their diabetes
management tends to become more challenging. It's even more difficult
for economically disadvantaged kids."

"In a pilot study, researchers at the University of Michigan Health
System found a family-based self-management intervention aimed at low
income adolescents with Type 1 diabetes led to better health and
functioning in the short term."

Read further..

Depression may be a hinderance to self-management

From "Effects of Enhanced Depression Treatment on Diabetes Self-Care."
Annals of Family Medicine 4:46-53 (2006)

"Among patients with diabetes, major depression is associated with
more diabetic complications, lower medication adherence, and poorer
self-care of diabetes. We reported earlier that enhanced depression
care reduces depression symptoms but not hemoglobin A1c level. This
study examined effects of depression interventions on self-management
among depressed diabetic patients."

The DAFNE program (Dose Adjustment For Normal Eating) 

"DAFNE allows people to fit diabetes into their lifestyle, rather than
changing their lifestyle to fit in with their diabetes.

About the DAFNE Trial:

Read some personal accounts of how the DAFNE program has helped
individuals to self-manage:  

Medical Outpatient Management combined with Education

From "Integrating medical management with diabetes self-management
training: a randomized control trial of the Diabetes Outpatient
Intensive Treatment program."  Diabetes Care. 2003 Nov;26(11):3048-53.

OBJECTIVE: "This study evaluated the Diabetes Outpatient Intensive
Treatment (DOIT) program, a multiday group education and skills
training experience combined with daily medical management, followed
by case management over 6 months. Using a randomized control design,
the study explored how DOIT affected glycemic control and self-care
behaviors over a short term. The impact of two additional factors on
clinical outcomes were also examined (frequency of case management
contacts and whether or not insulin was started during the program)."

CONCLUSIONS: "DOIT appears to be effective in promoting better
diabetes care and positively influencing glycemia and diabetes-related
self-care behaviors. However, it demands significant time, commitment,
and careful coordination with many health care professionals. The role
of the nurse case manager in providing ongoing follow-up contact seems

Understanding Actual and Target Health Outcomes

From "The relationship between knowledge of recent HbA1c values and
diabetes care understanding and self-management." Heisler M, Piette
JD, Spencer M, Kieffer E, Vijan S.  Diabetes Care. 2005

OBJECTIVE: "Knowledge of one's actual and target health outcomes (such
as HbA(1c) values) is hypothesized to be a prerequisite for effective
patient involvement in managing chronic diseases such as diabetes. We
examined 1) the frequency and correlates of knowing one's most recent
HbA(1c) test result and 2) whether knowing one's HbA(1c) value is
associated with a more accurate assessment of diabetes control and
better diabetes self-care understanding, self-efficacy, and behaviors
related to glycemic control."

CONCLUSIONS: "Respondents who knew their HbA(1c) values reported
better diabetes care understanding and assessment of their glycemic
control than those who did not. Knowledge of one's HbA(1c) level
alone, however, was not sufficient to translate increased
understanding of diabetes care into the increased confidence and
motivation necessary to improve patients' diabetes self-management.
Strategies to provide information to patients must be combined with
other behavioral strategies to motivate and help patients effectively
manage their diabetes."


A very comprehensive review and evaluation of recent studies
concerning self-management issues can be found in the following
"Effectiveness of Self-Management Training in Type 2 Diabetes. A
systematic review of randomized controlled trials." Susan L. Norris,
MD, MPH, Michael M. Engelgau, MD, MSC and K.M. Venkat Narayan, MD,
MPH. Diabetes Care 24:561-587, 2001.

CONCLUSIONS - "Evidence supports the effectiveness of self-management
training in type 2 diabetes, particularly in the short term."


Also read "Interventions for improving adherence to treatment
recommendations in people with type 2 diabetes mellitus." Vermeire E,
Wens J, Van Royen P, Biot Y, Hearnshaw H, Lindenmeyer A. The Cochrane
Database of Systematic Reviews 2006 Issue 1.


 Inhaled insulin may be one delivery system which will help promote
better self-management.

See "Inhalable Insulin to ameliorate pump problems." Collegiate Times.
February 1st, 2006

"Before eating a healthy lunch with friends, Megan Fisher, a senior
mechanical engineering major, slipped away quietly to check her
insulin pump, a tedious chore she must perform before every meal.
Diagnosed with diabetes at the age of 12, Fisher has become accustomed
to the painful pricks of insulin pens and the annoying inconsistencies
of insulin pumps.

"(Diabetes) is what I call a high-maintenance disorder, it?s always
there, it?s never going to go away and I can?t take a break from it,"
she said.

Fortunately for Fisher, and the estimated 21 million Americans with
diabetes, on Jan. 27, the Federal Drug Administration approved Pfizer
Inc.?s product Exubera, the first inhalable form of insulin. Unlike
insulin pens and insulin pumps, which involve painful injections,
Exubera orally distributes insulin to the lungs. In clinical tests,
Pfizer reported that Exubera maintained blood sugar levels just as
well as the traditional insulin treatments."

Read further...


 I hope the information I have provided is helpful for your research!



Search Strategy

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Subject: As one who has diabetes...
From: ocoeeriver-ga on 21 Mar 2006 10:55 PST
One of the particularly nasty things about diabetes is that the
effects can be subtle and down the road.  That is, a bit of tingling
in the toes is not something that would immediately send most
diabetics into overdrive about their disease.

One of the ways to help in this area is for a strong link to be forged
in the person's mind between the little things now...and the big
things to come (if action is not taken).  That is, link tingling in
the toes to outright amputation, and you'll get action.

My doctor, while a very good one, takes a calm approach to diabetes. 
That can be good and bad.  But while it keeps me from outright panic,
I suppose, it also provides very little urgency.

I know my answer isn't all the answer, but I'm convinced that it is part of it.
Subject: Re: diabetes denial and conversion
From: umiat-ga on 21 Mar 2006 16:27 PST
Thank you for an extremely helpful and insightful comment, ocoeeriver!

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