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This is to certify that the
dissertation entitled

GENDER AND AGE COMPARISONS FOR ADOLESCENTS
WITH DIABETES

presented by

ANN HARLAN

has been accepted towards fulﬁllment
of the requirements for

Ph . D . degree in SOCIAL SCIENCE

RENA D . HAROLD

Major professor

Date 7—18—97

 

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MSU to An Afﬁrmative Action/Equal Opportunity lnetltutlon -
mm:

GENDER AND AGE COMPARISONS FOR
ADOLESCENTS WITH DIABETES

By
Ann Harlan

A DISSERTATION
Submitted to ’
Michigan State University
in partial fulﬁllment of the requirements
for the degree of

DOCTOR OF PHILOSOPHY

Department of Social Science

1997

ABSTRACT

GENDER AND AGE COMPARISONS FOR
ADOLESCENTS WITH DIABETES

By

Ann Harlan

Adolescence is a time of turmoil that for some teens is compounded by
caring for insulin dependent diabetes mellitus. Gender and age comparisons
are missing from the literature to ascertain differences in the functioning and
difﬁculties faced by adolescents with diabetes. This research project as an
exploratory study to assess age and gender differences in teenagers 13-18
years old who attended the Michigan State University Pediatric Diabetes
Clinic. Quantitative data were drawn from patient charts of 93 adolescents.
Average glycohemoglobin results for one year were used as a measure of
diabetic control. Qualitative data was used to enhance an understanding of
the factors playing a role in the lives of the subjects. This was accomplished
through in-depth interviews of a subgroup of those in good and poor control.
Although there were no statistically signiﬁcant differences in gender or age
groups, the analyses revealed that most of the subjects, regardless of age or
gender, were in poor control of their diabetes. Issues that were relevant

included those in poor control who appeared to have an inaccurate

understanding of their diabetes, and its effect on their health (whether
through lack of education or denial) and those in good control who reﬂected

a sense of acceptance and responsibility for their diabetes.

DEDICATION
I dedicate this document to God, my dear friend, Diane Genshaw, my
love, Howard Sanderlin, my precious son, Kyle, and all my wonderful

friends. Without them, I am nothing.

iv

ACKNOWLEDGEMENT

I wish to thank my dear friend, Diane Genshaw, for her loyalty and
assistance in this project. The countless hours of help will never be
forgotten. She can have any of my spare organs, should she need them.

I also wish to express my gratitude to the love of my life, Howard
Sanderlin, who provided support and encouragement, took care of my
precious son, ran errands, and stood by me, through this trying ordeal.

To Kyle, my son, thank you for your understanding and patience
when I had so many deadlines to meet. No one could ask for a better son.

I extend my gratitude to my chair, Rena Harold (who was with me
from the beginning of my program), and my committee members, Harry
Schwarzweller (with his great sense of humor and willingness to spend time
with me), Paul Freddolino (for his kindness), and Linda Spence (who
rescued me in the ﬁnal hours). I sincerely appreciate all of the time and

attention necessary to complete this dissertation.

TABLE OF CONTENT

LIST OF TABLES ............................... viii
CHAPTER 1

INTRODUCTION ............................. 1

Introduction ............................. 1

Background Information ..................... 3

Diabetes ........................... 3

Medical Advances ..................... 4

Age, Gender and Diabetes ................ 5

Purpose of the Study ....................... 6
Relevance of the Study to the Field

of Social Science ...................... 9

Theoretical Base of the Research ............... 10

The Research Question ..................... 12

Limitations of the Study .................... 13

Summary ............................. 15

CHAPTER 2

REVIEW OF THE LITERATURE ................. 16

Introduction ............................ 16

Literature Search ......................... 16

Developmental Tasks and Roles of Adolescents ...... 17

Review of the Literature .................... 26
Psychological/Social Factors

Affecting Diabetes ................ 27

Individual Attributes and Idiosyncrasies ........... 28

Psychosocial Factors . . -. ................ 28

Weight Issues and Eating Disorders ......... 31

Family Culture and Dynamics ................. 36

Stress ............................ 36

Parental Support and Involvement ........... 36

Parenting Style and Conﬂict Resolution ....... 37

Mother and Daughter Relationships .......... 39

Responsibility ....................... 41

Community Context ....................... 46

Access to Medical Care ................. 46

Compliance ........................ 47

Summary ............................. 51

CHAPTER 3

RESEARCH DESIGN ......................... 53
Introduction ............................ 53
Quantitative Data ......................... 53

Recording of the Data .................. 54
Glycohemoglobins .................... 55
Subject Inclusion and Exclusion ............ 56
Collecting Data ...................... 57
Qualitative Data ......................... 58
Recording and Coding of Data ............ 59
Subject Inclusion and Exclusion ............ 60
Interviews ......................... 63
Hypothesis ............................. 65
Summary ............................. 65
CHAPTER 4

RESULTS ................................. 67
Introduction ............................ 67
Quantitative Analysis ...................... 67

Demographics ....................... 69
Data Analysis ........................... 77
Findings by Hypothesis ..................... 82
Qualitative Analysis ....................... 85
Themes That Presented in the Interviews ...... 91
Summary ............................. 95
CHAPTER 5

DISCUSSION .............................. 97

Introduction ............................ 97
Psychosocial Factors ................... 97
Family .......................... 102
Community ....................... 104
Summary ......................... 105

Future Research ........................ 105
General Issues for Future Research ......... 105
Speciﬁc Issues for Future Research ......... 108
Policy, Research and Clinical Implications . . . . 109

Summary ............................ 113

vii

APPENDICES

Appendix A ............................... 114
Appendix B ............................... 122
Appendix C ............................... 123
Appendix D ............................... 124
Appendix E ............................... 125
Appendix F ............................... 129
REFERENCES ................................ 130

viii

LIST OF TABLES

Table 1 - Example of Recording of Quantitative Data .......... 54
Table 2 - Sample of the Chart for Recording

Qualitative Data ................................. 59
Table 3 - Subjects by Gender Categories .................. 69
Table 4 - Subjects by Age and Gender Categories ............ 70
Table 5 - Frequency of Subjects’ Glyco Range .............. 72
Table 6 - Grouping of Male and Female Subjects by Age ....... 73
Table 7 - Number of Glycos in 1996 Per Subject ............. 74
Table 8 - Females With At Least One Glyco Above 10%

and 12.9% .................................... 75
Table 9 - Males With At Least One Glyco Above 10%

and 12.9% .................................... 76
Table 10 - ANOVA for Gender, Age, and Interaction

of Gender by Age ................................ 78
Table 11 - Chi-Square Results of Glycos for Males

and Females ................................... 79
Table 12 - Chi-Square Results of Glycos for Age Categories ..... 80

Table 13 - Chi-Square Results of Payment and Nonpayment
of Service by Number of Glycos ....................... 81

Table 14 - Multiple Regression Analysis with Five Variables:

Gender by Age by Length of Time With Diabetes by .
Number of Glycos by Payment ........................ 82

ix

CHAPTER I
INTRODUCTION
Introduction
Adolescence is a time of transition that involves many facets and may
include great turmoil. This can include physical development, hormonal shifts,
social transition to adult roles, and the accompanying emotional changes (Elliott,
Feldrnan, & Feldman, 1990; Lemer, 1987, 1991; Lerner & Spanier, 1980;
Peterson, 1988). Social scientists and others have studied this portion of the life
cycle from various perspectives such as family interactions and communication
pattems, peer relationships, develOpment, and sexuality (Brooks-Gum &
Furstenberg, 1989; Brooks-Gum & Peterson, 1983; Furstenberg, Levine, &
Brooks-Gunn, 1990; Hauser, Powers, Noam, Jacobson, Weiss, & Follansbee,
1984; Lemer & Knapp, 1975). One of the subgroups that has been studied is the
adolescent who has chronic illnesses. Within this subgroup are adolescents with
diabetes (Borcnstein, Harvilchuck, Rosenthal, & Santclli, 1996; Cadrnan, Boyle,
& Oﬂ'ord, 1988; Campbell & Patterson, 1995; Kallen, 1984; Meijer &
Oppenheimer,1995; Merkens, Perrin, Penin, & Gerrity, 1989).
Adolescents with insulin dependent diabetes mellitus (IDDM) present as a
particularly challenging group to parents, medical providers, social scientists, and

others who play a role in their develOpment or caregiving. The usual

development of the teen years is certainly compounded by facing a continual
medical condition that is potentially life threatening.

This research project focused on the adolescent with diabetes, with an
emphasis on the differences that might appear in the control of diabetes in males
and females throughout the teen years. There was a fairly substantial amount of
research on adolescent with diabetes (Amiel, Sherwin, Sirnonson, I..auritan,. &
Tarnborlane, 1986; Grossman, 1987; Hanson, Henggeler, & Burghen, 1987;
Hauser, Jacobson, Lavor, Wolfsdorf, Herskowitz, Milley, Bliss, Wertlieb, &
Stein 1990; Kovacs, 1979; La Greca, 1982; Marrero, Lau, Golden, Kershnar, &
Myers, 1982; Pcveler, Fairbum, Boller, & Dunger, 1992;). However, one facet
that had little information was that of a comparison between males and females
with diabetes. Research had been done about differences between males and
females on topics such as learning, and communication, and these will be
addressed in subsequent sections. It is expected that by examining the previously
stated differences between the genders and applying these differences to the
complex life of the adolescents who have diabetes, there should be a better
understanding of their lifestyle. This better understanding should lead to

improved interventions to assist teens with diabetes and their caregivers.

Background Inforrn_ati on

Mics

IDDM is one of the major chronic ilhresses that affect the health of
children with 1.8 in 1,000 children having this condition (Penin, 1992). Every
year in the United States, 11,000 to 12,000 children are diagnosed with IDDM
(U. S. Department of Health and Hmnan Services, 1994). It is one of the most
common childhood illnesses.

Diabetes mellitus is:

A disease that occurs when the body is not able to use sugar as it should.

The body needs sugar for growth and energy for daily activities. It gets

sugar when it changes food into glucose (a form of sugar). A hormone

called insulin is needed for the glucose to be taken up and used by the

body. Diabetes occurs when the body cannot make use of the glucose in

the blood for energy because either the pancreas is not able to make

enough insulin or the insulin that is available is not effective (U. S.

Department of Health and Hmnan Services, 1994, p. 5).

Prior to the discovery of insulin, children with IDDM died prematurely
and suffered from growth retardation (Clarke, Vance, & Rogol, 1993). Since it
has become standard procedure to use insulin to treat IDDM, inadequate grth

is uncommon. Furthermore, currently over 90% of children with IDDM are

expected to survive into adulthood (Orr, Fineberg, & Gray, 1996). These data
offer hope to a current generation of teenagers who suffer from diabetes.

Non-insulin dependent diabetes mellitus (NIDDM) is considered a
separate disease from IDDM that generally affects adults who are overweight.
Although adolescents can occasionally have NIDDM, it will not be addressed or
included in this paper to maintain the focus on the more prevalent and serious
chronic illness of IDDM.
Medical Advances

The effects of a lack of insulin were ﬁrst recognized in 1889 in Germany
through observations in animal research after a total pancreatectomy.
Interestingly, an adolescent was the ﬁrst human ever recorded to have received
any treatment for diabetes. Pancreatic extract was ﬁrst injected into a human (a
14 year old boy) in 1922 in Toronto. Insulin was distributed in most Western
countries by the end of 1923 to safely and effectively treat diabetes (Bliss, 1993).
Insulin is now administered at home by the adolescent, family or caregiver
through injection and is considered standard treatment for IDDM.

The most important contribution to the care of IDDM after insulin was the
invention of the portable home blood glucose monitor (HBGM) or glucometer.
This electronic devise allowed people with diabetes to test their blood glucose at.

any moment in time to monitor the current blood sugar. These instruments are

fairly inexpensive although the test strips used 3-4 times a day are costly. The
HBGMs were tested and shown to be as accurate as laboratory testing to
measure blood glucose (Tate, Clements, & Walters, 1992). This was important
because adolescents with diabetes could monitor their blood sugar and change
insulin on a regular basis, which provided better diabetes care and decreased the
chances of both short and long term complications (U. S. Department of Health
and Human Services, 1994).

Blood tests called glycohemoglobins (glycos) are currently utilized to
determine overall control of diabetes. This test is conducted in a laboratory or
medical clinic and gives a percentage of blood sugar that represents a 2 to 3
month period of time. This number is utilized to determine the level of diabetes
control with higher numbers demonstrating more poor control. At the Michigan
State University (MSU) Pediatric Diabetes Clinic a non-diabetic range is 4.8% to
7.8% which is consistent with the national standards (Anderson, Anderson, &
Glanze, 1994; The DCCT Research Group, 1988, 1996)

Age, Gender and Diabetes

Diabetes is an important disease to study as it is a potentially fatal
condition when not treated adequately (Anderson, Anderson, & Glanze, 1994;
Bliss, 1993). This section will address some of the relevant age, developmental,

and gender issues.

This research entailed looking at adolescents with diabetes and
determining whether there were age and gender differences. There was an
accent on the overall issues within age and gender that might have played a role
ill both variables. The focus of the tasks of adolescents for identity and
l'nvulnerability, peer pressure, and social inﬂuences all played a role in the
possrble difference in the research subjects and are discussed in Chapter 2 (the
Literature Review).

Lumose of the Study

Because of the complexities of the care of diabetes combined with the
developmental issues of adolescence, it was important to determine how
adolescents were managing diabetes. In order to provide optimal care for the
adolescent with diabetes, it was critical to look at the differences between the
males and females in relationship to their management of diabetes care. Age,
which for the purposes of this study was limited to chronological, was also
included in this assessment to determine whether it had an impact. It was
decided by this researcher to divide the sample group into three categories in
which there are two years in each category as there are developmental
differences between younger and older adolescents (Cole & Cole, 1993;
McGraw, 1987; Peterson, 1987). In this researcher's opinion these categories

reﬂected early, middle, and late periods in adolescence. The three age groups

were: early (13-14 year olds), middle (15-16 year olds), and late (17-18 year
olds). These categories were chosen to attempt to determine whether there was a
difference in control of diabetes by age.

The literature did not demonstrate any empirical determination of whether
adolescent males or females had a more difﬁcult time controlling their diabetes,
so it was not possible to presume what information might be gleaned from this
project. However, it was clear that there was a need to determine what was
taking place with adolescents with diabetes and how the gender and age
differences might have played a role.

The motivation for this study stemmed from the clinical experience of staff
at the MSU Pediatric Diabetes clinic and their discussions about the differences
in adolescents with diabetes. Several staff members had speculated that females
had more difficulties than males in controlling their diabetes. No research on this
topic had been conducted at this setting to determine whether it was accurate,
and it may have been a clinical bias based on the focus of problems on a small
number of troubled females. This research project was designed to assist in
determining whether such a difference existed.

The most prevalent need for this study resided in the lack of existing data
to assist health care providers in determining what is taking place in the lives of

the various subgroups of adolescents with diabetes. Clinical experience was

important in formatting research questions as the current literature lacked
substantiation of gender and age differences in adolescents' control.

Further need for this study was presumed based on the evidence of the
complex life that faced adolescents in our society as previously noted. This study
will provide additional information about the teen years to expand upon the
existing research. Adolescence is generally considered a challenging time with
many internal struggles (such as the conﬂict in the quest for autonomy), social
impacts (such as peer pressure), and environmental factors (such as laws
governing the limitations of the teenager's ability to work and be independent).
For the adolescent with diabetes, normal adolescent traits and struggles could be
complicated by the care of an illness. Research noted in the literature review in
Chapter 2 of the project has aided in the understanding of what is happening to
the adolescent with diabetes. However, again while many of these factors have
been researched, a basic tmderstanding of the interaction of age and gender for
adolescent males and females with diabetes has been overlooked.

This project addressed this aspect and examined quantitative data to see
whether there were differences in the subgroups. Based on the results of the
quantitative data, qualitative interviews were conducted to enhance the results.
The qualitative portion is explained in more detail in another section. It is the

researcher‘s hope that this information will provide a foundation for future

— 4v”..-

research to build upon the noted differences in control of diabetes to assist in
providing services that will ease the adolescent's struggles and increase their
quality of life. The purpose of this study was to set the groundwork for ﬁrture
research through this exploratory project, and to develop empirically based
interventions for this population.
Melange of the Study to the Field of Smial Science

Social Science frequently studies subgroups of people in order, to identify
problem areas and to offer explanations of how events impact the lives of the
people involved. It was hoped that this research project would offer insight into
gender and age categories that might indicate subgroups with more signiﬁcant
problems controlling diabetes and lead to the development of interventions that
might assist those that were having difficulties. The social sciences have
historically had a great impact on many aspects of medical care (Glassner, 1981;
Hollingshead, 197 3). Working together with health professionals could increase
the quality of care through attention to a gender and/or an age speciﬁc approach
to diabetes education, counseling, physical examinations, and support groups.
For example, if it was determined through quantitative analysis that females have
a more difﬁcult time controlling diabetes, the qualitative research might assist in

determining what was interfering with the ability of females to conduct diabetes

10

care. This might lead to recommendations for an approach such as incorporating
information on eating disorders during diabetes education.
Theoretical Base of the Researc_h

Social science is composed of a systematic organizing of concepts to
provide a framework to understand some aspect of social functioning. In the
discipline of medicine patient behaviors were often studied by social scientists
(Glassner, 1981; Hollingshead, 1973). Several theoretical approaches have been
developed over the years to understand and sometimes predict patient behavior.
Historically the traditional Medical Model, dominated the health ﬁeld for many
years (Freeman & Levin, 1989). It was based on a focus on pathology with a
belief that health was beyond the control of the patient. Parsons' (1951) "sick
role" exempliﬁed this in that the physician provided care to the helpless patient.
The more contemporary models of the Compensatory Model and Health Belief
Model from the health and social science ﬁelds were a more appropriate basis for
this study.

The Compensatory Model (Becker & Rosenstock, 1989) focused on
individual power in health behaviors. It did not blame the patient for their illness
but rather expected the patient, at least in part, to be responsible for their

recovery, or to compensate for the handicaps that were side-effects of the illness.

11

The Health Belief Model, which grew out of health education programs,
began by trying to determine why people behaved as they did, particularly in
conducting or avoiding preventative health behaviors. A commonly cited
example was that of immunizations. Because of the importance of
immunizations in preventative health care, many studies were conducted to
determine why certain people obtained immunizations for their families, with
correlations for beliefs and intentions (Kirscht, 1988; Rosenstock & Kirscht,
1979)

Both the Compensatory Model and Health Belief Model focused on the
role of prevention (Becker & Rosenstock, 1989; Kirscht, 1988; Rosenstock &
Kirscht, 1979;) Prevention was of particular importance for those who had
diabetes. For example, regardless of whether or not they were effective,
adolescents with diabetes generally took an active role in the care of their
disease. When an adolescent was having a low blood sugar episode, they treated
it by ingesting some sugar or juice. Teenagers generally moved from one activity
to another, and were not overseen on a continual basis throughout the day by
their parent and/or teacher. Furthermore, these incidents were sometimes
unpredictable and had to treated as they arose. This treatment demanded an
active, preventative involvement on the part of the patient. The two approaches

used in this research placed no blame on the teenager for their diabetes, but

12

showed an underlying understanding that they were responsible for some aspects
of their diabetes care in that they were physically and emotionally capable of
conducting blood sugar tests and giving insulin injections. Included in this were
the assumptions that the adolescent and/or their family was involved in regular
doctor's appointments, blood sugar tests, and insulin injections that were
considered not only preventative but also necessary components of diabetic care.
The Research Question

This research project was an exploratory project that involved reviewing
patient charts to assess the possible difference between gender and age in regards
to control of diabetes for adolescents. In the absence of any deﬁnitive research,
the initial research question was whether gender made a difference in control of
diabetes. Furthennore, there is often a vast difference between younger and
older adolescents in terms of their development, so the second research question
was whether age made a difference in control of diabetes. There were ﬁve
hypotheses offered in the quantitative part of this research project:

Hypothesis #1 :

There will be differences between control of diabetes for adolescent males

and females, based on the results of their glycohemoglobins.

l3

Hypothesis #2:

There will be differences in age categories (i.e. early, middle and late
adolescence) in control of diabetes between male and female adolescents, based
on the results of their glycohemoglobins.

Hypothesis #3

There will be differences in the interactive effect between age and gender,
based on the result of the glycohemoglobins.

Hypothesis #4

There will be differences in gender for dichotomous glycohemoglobins
levels of equal to or less than 10% or greater than 10%

Hypothesis #5

There will be differences in gender or age categories for independent
variables of gender, age, length of time with diabetes, and number of

glycohemoglobins obtained.

leltations of the Study

Because this study was exploratory, there were many possible limitations
that were present. First, the patients who attended the clinic might not be an
adequate representation of a population of adolescents with diabetes. The
population consisted mostly of those who lived in the greater Lansing area and

those from r'ural areas might not be adequately represented.

14

Second, because a pediatric subspecialist is an expensive service, those
who attended the clinic generally either had health care beneﬁts or were able to
afford the extra cost involved in seeing a specialist. While Medicaid patients
attended the clinic, those who did not qualify for Medicaid and did not have
commercial insurance would not likely attend this setting. Therefore, the
working poor might be missed in the samme.

Third, the laboratory tests were accumulated from the results of 1996 and
represented only one year of information, not test results over several years in the
life of each individual. Longitudinal information might have offered more rich
data on the ﬂuctuation of the glycohemoglobins over the adolescent years.
However, it is hoped that by sampling the different age groups, this provided
adequate information to determine if there were differences in groups.

In spite of the limitations of this research, the purpose of the study was to
present a snapshot of what was taking place in the lives of adolescents with
diabetes. Hopefully, this study will offer information that will direct future
research to areas that will assist the adolescent with diabetes.

This project included both quantitative data and qualitative data. The
quantitative data was drawn ﬁ'om clinical charts from the Michigan State

University Pediatrics Diabetes Clinic and the qualitative data was derived

15

from a selected sample of the subjects from whom the quantitative data was
obtained. Chapter 3 describes the design of the study in detail.
Summa_ry

In this chapter, the purpose for the study was stated as to determine if
there were any differences in managing IDDM between and among male and
female adolescents. Further, the purpose of the study was to set the
groundwork for future research about male and female adolescents with
diabetes. The need for the study was established by indicating the lack of
information about comparisons of adolescent males and females in the
literature. Relevance of the study to the ﬁeld of social science was
highlighted by deﬁning adolescents with IDDM as a population subgroup. In
particular, subgroups with medical problems were studied by social scientists
who historically have had great impact on many aspects of medical care. The
theoretical bases of this study resided in Parson's "sick role", the Medical
Model, the Compensatory Model, and the Health Belief Model. The
research hypotheses were given. This research was presented as an
exploratory study. Limitations of the study were related to the population, the

methodology and the procedures.

CHAPTER 11
REVIEW OF THE LITERATURE
Introduction
The ﬁrst part of this literature review discusses how the literature was
searched. Next, the developmental tasks and roles of adolescents and how these
are affected by the diagnosis of IDDM are examined Then psychological and
social factors in diabetes care are investigated. In this section, special attention is
given to differences between males and females in regards to the management of
their disease. Next, family culture and dynamics are reviewed to see how
parenting practices and management of the diabetes are intertwined. Finally,
how the community impacts the adolescent with diabetes, and how the
adolescent with diabetes is impacted by the community are explored.
Litegture Search
An intense literature search was conducted of both medical and
psychosocial data bases for current information on adolescents with diabetes.
The search was generally limited to the previous 10 years to obtain recent
ﬁndings as medical care for Type I diabetes has changed dramatically since
the invention of the glucometer discussed earlier. Keyword such as
adolescence, diabetes, teenager, and glycohemoglobin were utilized.

Literature bases included Medline, Health Star, Psychlit, and Sociology and

16

17

Social Work Abstracts. Journals that are speciﬁcally written for patients and
health care providers on diabetes were included. All articles on Type II
diabetes were eliminated. Articles that were found that discussed adolescents
with Type I diabetes were included in this research project. Staff at the MSU
Clinical Center provided some guidance into the search with articles that they
had accumulated about particularly relevant issues. For instance, The DCCT
research (The DCCT Research Group, 1995, 1996) was generally conducted
on adults with Type I diabetes, and yet the results of that research
demonstrated that by increasing the number of tests that were conducted in a
day (to at least three a day) and redistributing insulin to smaller doses more
frequently (usually from two to three or four shots a day), the subjects
showed a dramatic improvement in diabetes control which decreased diabetic
complications over along period of time. This was particularly important as
the MSU Pediatric Diabetes Clinic has recently incorporated the results of
this research into practice and has switched many adolescents from two to
three shots a day (B. E. Wilson, personal communication 1996).
Developmental Tasks and Role of Adolescents

Young, Anderson & Steinbrecher (1995) argue that, "Psychology has

traditionally undervalued adolescence as a transitional period between childhood

and adulthood, rather than viewing it as a distinct entity in its own right, and this

l8

perspective has ﬂavored adolescent assessment, diagnosis, and intervention (p.
343). They argue that adolescents often present with different symptomatology
than children and adults and cite the example of anger and acting-out as a sign of
depression as opposed to adult symptoms like difficulties with sleeping, eating
and crying. Included in this is the fact that these needs are not addressed
adequately because of a lack of attention and services designed for their unique
place in the life-cycle. Furthennore, Takanishi (1993) argues that currently teens
are presenting with mental health needs at alanrring rates. For adolescents with
substance abuse and mental health needs, ﬂre lack of the ability of adequate
research and mental health services to cope with these, makes it more difficult to
serve adolescents with diabetes.

Erikson‘s (1968) work on adolescence highlights the important task of
establishing an identity during this stage in the life-cycle. This theory focuses on
a physical and emotional crisis in which positive resolution results in a sense of
identity while the inability to adequately maneuver through this stage results ill
role confusion. Included in this stage is the focus in our society on males being
encomaged to be competitive and pursue a career while females are encouraged
to be more passive and make themselves attractive to males for ﬁrture partners,
as opposed to planning for a career (Tischler, 1996). The crisis that arises in the

quest for identity may be negatively impacted by a chronic ilhress. For instance,

19

a 15 year old may desire to try out some new independence by eaming money
through baby-sitting. This may be prohibited by either set of parents as they may
worry that the teenager will have a blood sugar reaction and be incapacitated
while attending to younger children. Although baby-sitting might be viewed as a
normal "right of passage" for this age, this teen may be not permitted to pass
through this new step in his or her search for autonomy.

Included in adolescence is a time that is marked by feelings of invincibility
when the teenager does not believe that the consequence of some action or some
situation will occur to them. The development of the adolescent to Formal
Operations (lnhelder & Piaget, 1958; Piaget, 1970, 1972) is striking in that the
teenager discovers that there is a cause and eﬂect relationship but also that
effects may take time and not be an immediate reaction. If the adolescent has not
reached the stage of Formal Operations Stage, she/he may delay appropriate
diabetes care especially the taking of blood tests. Physical reactions or
discomfort often do not immediately follow inappropriate amounts of insulin.
Even if the adolescent has reached the stage of Formal Operations he/she may
avoid blood sugar tests and continue to give a set amount of insulin because it is
easier than testing regularly and adjusting insulin or because they can avoid
facing their own vulnerability by not attending to their disease. The Formal

Operational Thought Stage is generally a feature of early adolescence and may

20

begin in the preteen years however, it is more developmentally dependent rather
than age dependent and some teens may not reach the Formal Operations Stage
until adulthood. The Formal Operations Stage is an important milestone in that
the adolescent can think abstractly and see the consequences of their action or
inaction. Subjects for this study were selected at 13 years of age and older
because it was presumed that most of them would be able to think about the
future and already have incorporated the consequences of attending to or
avoiding care of the diabetes. Clinical experience and heuristics about teenage
behavior lead to the anticipation that despite their ability to understand the
consequences of their actions, many of the teenagers may not be controlling their
diabetes well (Golden, Herrold, & Orr, 1985; Ingersoll, Orr, Herrold, & Golden,
1986) . This, in part, may be due to inability or tmwillingness to think about the
future.

Adolescence is a time when an individual often feels free from the burdens
and responsibilities of adulthood and looks forward to planning a ﬁrture with
many hopes and aspirations. A chronic illness, such as diabetes can interfere with
this plan. Whether or not an adolescent is able to face this condition and its
ramiﬁcations or not, diabetes highlights one's frailty or mortality. To conﬁont
diabetes during this optimistic time in life can be very difﬁcult. It is essential to

study the issues of the adolescent combined with those of the care of diabetes to

21

understand how they interact in order to plan for appropriate treatment based on
the needs of the subgroup. The importance of the interaction of physical and
emotional development with chronic illness has been recognized particularly as it
relates to larger institutions, such as hospitals. Kallen (1984) has noted,

The central task of adolescence - resolution of conﬂict between autonomy

and dependency, the development of intimacy and competence, the ability

to take on adult roles, and the development of the self - may be hampered
by a total institution which depersonalizes patients and fosters dependency

(p. 78).

The adolescent with diabetes interacts with medical facilities much more than the
teen who does not have a chronic illness. Based on Kallen's and other‘s work, it
is speculated that, the development of the adolescent with diabetes may be
impaired through the depersonalization and dependency that stems from their
reliance on medical care.

Peer pressure plays an important role in the development of the
adolescent. As they strive for autonomy from their family, their peers' inﬂuence
increases (Savin-Williams & Bemdt, 1990). Research shows that there are
differences in ages for adolescents in their susceptibility to peer pressure.
Younger adolescents are more vulnerable to peer pressure than older adolescents

(Bemdt, 1989; Bixenstine, DeCorte, & Bixenstine, 1976; Collins, & Thomas,

22

1972). In the United States, teenagers average 20 hours outside of the classroom
with peers, which is a major contrast to the two to three hours of time spent with
peers in Japan or Russia, and furthermore, the time with peers increases with the
age of the adolescents (Csikszentrnihalyi & Larson, 1984). Being prone to peer
pressures may be mediated in the younger adolescent by more parental
restrictions. However, older adolescents spend more time with peers, and utilize
their peers to try on new identities, it is logical that older teens would be greatly
impacted by their ﬁiends. Despite younger adolescents being more susceptible
to peer pressure, the older teens may risk getting into more serious difﬁculties as
they have more ﬁ'eedom. For example, a 16 year old adolescent may drive a car
while drinking while a 14 year old who drinks will generally have less access to a
vehicle to cause an accident.

There has been a marked increase in problems among adolescents as
demonstrated by increases in eating disorders, smoking and the use of drugs, sex
at younger ages, and violent behavior (Blumstein, Cohen, Roth, & Visher, 1986;
Elliott, Huizinga, & Menard, 1989;Kande1, 1980; Kandel, Davies, Karus, &
Yarnaguchi, 1986; Lucas, Beard, Kranz, & Kurland, 1983; National Institute of
Drug Abuse, 1987; Strober, 1986). This increase allows for many negative
social inﬂuences to permeate the enviromnent of the adolescents. For those with

diabetes, this can greatly impact their health. For example, the use of drugs may

23

impair the adolescent's ability to care for their diabetes as their blood sugars
ﬂuctuate under the inﬂuence of the drugs or the concentration of sugar in the
alcohol. Additionally, they may become unable to attend to the diabetes because
they are high, drunk or unconscious. This may partially account for differences
in diabetes control that may be present in older adolescents.

Adolescent girls report more concern about their appearances than do their
males counterparts (Violato, & Holden, 1988). This information is consistent
with the other research about the modern social pressures on women to be thin.
This concem often leads to eating disorders for women (Boskind-White &
White, 1986;; Brurnberg, 1985; Lucas, Beard, Kranz & Kurland, 1983 Strober,
1986). This addition of problematic eating behaviors and thinness can negatively
impact diabetes as blood sugars ﬂuctuate dramatically during binging and purging
as well as during times of restricted eating. This again may play a role in the
possibility of female adolescents having poor glycohemoglobins.

There are many inﬂuences on adolescents. Developmental and social
pressure that impact older adolescents in their movement toward autonomy and
adult roles may be interrupted by diabetes. For females, the added pressures of
trying to be thin can cause eating disorders. Often their focus is on the way that

they look because they feel they must be thin to develop relationships with the

24

opposite sex. This leads to the speculation that older adolescent females may be
in less control of the diabetes.

When an adolescent is diagnosed with diabetes, they may have previously
been a healthy individual with no farmly history of IDDM. It is often a shock for
the family to discover that their child has this chronic illness through a trip to the
emergency room when the adolescent becomes seriously ill. After the initial
trauma and stabilization of the teen, the family is generally instructed in the care
of diabetes by the hospital staff. They are then sent home with the expectation
that they will make adjustments in their lifestyles to accommodate the diabetes
regimen.

The treatment of diabetes always involves taking multiple blood tests
through ﬁnger pokes and administering insulin on a daily basis. Hypoglycenric or
low blood sugar episodes are to be monitored and the adolescent is given sugar
when their blood glucose level falls too low. To miss treating an episode means
that the adolescent is at risk for going into a coma from insulin shock, and
perhaps dying. Hyperglycerrric or high blood sugar episodes are when the patient
has blood sugar levels that are too high. This may happen when the adolescent
becomes ill with conditions such as inﬂuenza, or by not getting enough insulin.
Hyperglycemia can lead to diabetic ketoacidosos (DKA). During DKA, the

patient must receive insulin to allow energy to get into the cells and take extra

25

ﬂuid to assist in ﬂushing ketones from the mine. In acute hyperglycemia, the
patient risks going into a coma and possibly dying. In chronic, lower levels of
hyperglycemia, the adolescent risks developing kidney failure and eye damage,
and over time, may die prematurely (U. S. Department of Health and Human
Services, 1994).

The adolescent and family are required to maintain a blood sugar level
range that will avoid hyper- and hypoglycemic conditions. Unforttmately, insulin
is a hormone that interacts with the human body, and responds to other
hormones, such as those that are ﬂuctuating during puberty. It also interacts and
responds to body changes, like increases or decreases in exercise, food
consumption, and positive and negative stress (Clarke, Vance, & Rogol, 1993;
Golden, Herrold, & Orr, 1985). The family's quest to maintain blood sugar levels
becomes a complicated process. An adolescent who stays after school to
participate in a play or basketball practice may miss a snack. A teen without
diabetes who misses this snack may merely go hungry while a teenager with
diabetes may lapse into a coma from a low blood sugar episode. Similarly, a
common teenage behavior of sleeping in on Saturday mornings is no longer a
viable option to those with IDDM as they must get up, test their blood sugar,

give an insulin injection and eat near to the normal awakening time.

26

Review of the Literature

 

As is evident, the adolescent’s lifestyle is permanently altered by the
diagnosis of diabetes. Even if s/he is able to maintain appropriate blood sugar
levels, the cost of this process is that s/he must always be diligent about
attending to the diabetes regimen. To miss one insulin injection may mean
that the adolescent ends up ill or in the hospital, (Clarke, Vance, & Rogol,
1993; Golden, Herrold, & Orr).

Diabetes causes adolescents to make extreme changes in their lifestyle.
They have to adjust to incorporating a regimen that means getting up at about
the same time every day, testing blood sugar levels several times a day, giving
insulin injections at least twice a day, going to the doctor’s office more
frequently, undergoing regular laboratory tests, carrying sugar products to
treat hypoglycemic episodes, and making sure that insulin is adjusted
regularly to avoid high and low blood sugar levels. In addition, the
adolescent must now transpose all of this information and diligent work onto
the physical, emotional, developmental, and psychosocial factors that may be
taking place. Then they must integrate all these factors when dealing with

their family, home, school, peers, and community (Clarke, Vance, & Rogol,

27

1993; Golden, Herrold, & Orr, 1985. The next section will address the added
complication that the teen with diabetes must now face and how these interact
with diabetes care.

Psychological/Social Factors Affecting Diabetes

Controlling diabetes can be a complicated process. For the adult, this
regimen can be challenging, but often more so for the adolescent, who may
not be able to c0pe with adult responsibilities or to face the need for this
attention to health care when they are at a developmental stage that
demonstrates their feelings of invincibility and unwillingness to think into the
future.

Adolescence is a time of change and the growth, developmental and
psychosocial factors that play a role in this portion of the life cycle probably
contribute to some difficulties in diabetes management. Interestingly, while
age or maturity may play an important role in the adolescent’s ability to
control diabetes, no studies were found that compared the younger and older
adolescent in relationship to their abilities to manage their diabetes care.

The following literature review focuses on studies that are about
adolescents with IDDM. The information presented here is a summary and
synthesis of the research. The topics were categorized in a style based on the

model by Bronfenbrenner (1977), which begins with a microsystem view of

28

individual issues, advances to the linking to mesosystem family issues, and
ﬁnally addresses the exosystem which are those components in which the

adolescent does not participate directly.

Individual Attributes and Idiosyncrasies

Psychosocial Factors

Many psychological factors that directly affect the adolescent on an
individual basis show up in the literature (Grossman, 1987; Hanson,
Hengeler, & Burglen, 1987; Hanson & Prichert, 1986; Thomburg, 1982;
Wysocki, 1993). Depression, stress, communication and conﬂict resolution
skills, social competence, self-esteem, and peer pressure will be addressed in
this section. Due to the prevalence of eating disorders among this p0pulation,
special attention will be placed on this component (Felts, 1996; Fodor &
Thai, 1984; Pcveler, Fairbum, Boller & Dunger, 1992; Stuart & Jacobson,
1979)

As early as 1979, Kovacs noted that depression was seen in the
adolescent newly diagnosed with diabetes and this was attributed to a
mourning reaction as part of their grief process. However, Grossman (1987)
later attributed the depression to the adolescents' belief that they did not have
any control over the disease (external locus of control) combined with a low

self-esteem. Depression inﬂuences individuals in different ways but can

29

certainly interfere with a person attending to personal or medical care. It may
cause teenagers with diabetes to neglect the regimen needed to control their
diabetes

Teenagers' abilities to cope with normal activities of daily living vary.
Some adolescents are able to accept responsibility at much younger ages than
others. This variation obviously may be reﬂected in their diabetes care. For
example, in a study of 39 adolescents (12 to 15 years old) who attended a
summer camp for children with diabetes, there was a signiﬁcant impact in
better diabetes control among those who had better coping strategies for
minor daily stress These strategies included their ability to problem solve
effectively and good communication skills (Hanson & Pichert, 1986).

Other skills are also relevant to good control of the diabetes. A study
was conducted with 115 adolescents with IDDM that indicated that good
communication and an ability to resolve conﬂicts effectively, positively
impacted the adolescents ability to have good control of the diabetes
(Wysocki, 1993). In a study by Hanson, Henggeler and Burghen (1987) of
104 adolescents who displayed high social competence under stress there
were no linkages with poor metabolic control and stress. However, those
with poor social competence combined with stress were correlated with poor

metabolic control.

3O

Compounding diabetes care is the turmoil that faces the adolescent
during the teen years. Fluctuatin g hormones and emotions may cause mood
swings. Conﬂicts with parents and authority ﬁgures are common among
adolescents as they try on different roles to establish an individual identity,
struggle with “goodness of ﬁt”, and wrestle with their shifting moods. In the
past, adolescents who were involved in lying and stealing were considered
maladjusted or even considered to have personality disorders. However,
more information has led to the realization that such behaviors may be “peer
induced, sanctioned, and reinforced” and that they may be a part of the
normal “range of functioning” for adolescents (Thomburg, 1982). Some
teens present false blood sugar numbers or refuse to participate in the blood
tests.

While deceptions and resistance may be part of the adolescent peer
culture, they make diabetes management more difﬁcult. Misrepresenting
blood sugar numbers to parents or medical personnel can lead to increased
conﬂicts as the false information is discovered and the teenager is conﬁonted.
Based on the clinical experience of the MSU Pediatric Diabetes Team, it is
not unusual for teens to give inaccurate blood sugar numbers. Whether this is
to make parents happy, avoid dealing with the diabetes, or some other reason,

it inevitably causes conﬂicts as parents attempt to determine the truth.

31

As noted above, stress, coping abilities, locus of control, self-esteem,
social competence, communication, conﬂict resolution skills, and peer
pressure all contribute to the adolescent’s ability or inability to adjust to and
manage their diabetes. In summary, an adolescent who has low self-esteem,
poor social skills, and adverse environmental stress, will more than likely not
be able to manage their diabetes as well as one who has good coping and
communication skills, an internal locus of control, and a positive image of

themselves.

Weight Issues and Eating Disorders

 

Sociologists have long recognized the importance of the cultural norms
of society. The current Western idolization of thinness has had an impact on
fashion, sale of merchandise for ﬁtness and individual lifestyles, and
particularly on our focus on weight and increase in eating disorders.

In a general study of children who did not have diabetes (Felts, 1996)
of the 10,000 students in grades 9-12, 25% believed that they were too fat.
This supports the cultural norm that extends back to the 1970s in which it was
noted that 34.6% of the females and 14.4% of the males felt that they were
too fat (Stuart & Jacobson, 1979). A later study noted that 75% of
adolescent females felt they were fat compared with 25% of the males (F odor

& Thai, 1984). This concern with thinness seems to impact females more

32

frequently and may play an important role in the proposed differences
between diabetes care of females and males. Since females report concern
over being fat at a substantially higher rate than males, they may be more
concerned about their appearance, and/or be more likely to be involved in
disordered eating behaviors than their male counterparts. This is tied in with
issues of excessive weight, disordered eating behaviors, diet, insulin
manipulation, social pressures (particularly on females), and the
consequences of not treating diabetes as mentioned below.

To have diabetes and live in a culture that is focused on being thin
presents a signiﬁcant dilemma. Several studies have noted that adolescent
and young adult patients, both males and females, with IDDM weighed
signiﬁcantly more than their non-diabetic peers in control groups even in the
ﬁrst year of the introduction of insulin therapy (Peveler, Fairbum, Boller, &
Dunger, 1992; Steel, Lloyd, Young, & Maclntyre, 1992; Steel, Young, Lloyd,
& Maclntyre, 1989). Butler and Wing (1995) pointed out that the tendency
to gain weight may compel those with IDDM to lose the excessive weight as
this would probably be an undesirable side-effect of diabetes treatment. Once
again, since adolescence is a time in which the teenager is determining their
identity by exploring different roles, being thin can become an important

component in the search for a sense of self.

33

Artiﬁcially controlling insulin through adjusting injections is certainly
not the same as having one’s body control the levels and may contribute to
weight gains. Being overweight in a society focused on being thin may lead
those with diabetes to feel inadequate or lead to eating disorders or
disordered eating behaviors. Marcus and Wing (1990) have noted that ﬁom
1960 through 1980, there was a noteworthy number of reports of adolescents
with diabetes who later developed eating disorders (anorexia and bulimia).
The research is controversial about whether adolescents with diabetes have a
higher rate of eating disorders than the general public. Some larger, older
studies using self-reports noted that there was a higher rate while smaller,
newer studies using the Eating Disorder Examination instrument have noted
that there is no difference in the rate of eating disorders between teens with
diabetes and control groups without diabetes (Birk & Spencer, 1989;
Fairbum, Pcveler, Davies, Mann, & Mayou, 1991; Hudson, Wentworth, &
Pope, 1985; La Greca, Schwarz, & Satin, 1987; Pcveler, Fairbum, Boller, &
Dunger, 1992; Powers, Malone, Coovert, & Schulrnan, 1990; Rodin, Craven,
Littleﬁeld, Murray, & Daneman, 1991; Rodin, Johnson, Garﬁnkel, &
Kenshole, 1986; Stacin, Link & Reuter, 1989; Striegel-Moore, Nicholson, &

Tamborlane, 1992).

34

It is unclear what all the factors are that contribute to disordered eating
behaviors, but studies by Rosmark, Beme, Hohngren, Lago, Renholm, and
Sohlberg (1986) and Rodin, Johnson, Garﬁnkel, Daneman, and Kenshole
(1986) indicated that IDDM may accelerate the onset of eating disorders in
adolescent females. This may result in part because of the strict regimen that
is required to maintain metabolic control, such as rigid diet control and
preoccupation with weight. Diet control and a focus on weight combined
with the ready availability of insulin manipulation may serve as a weight
control mechanism. The medical situation becomes more difficult to manage
when diabetes is compounded with an eating disorder as insulin is generally
administered to the adolescent based on determining the need as indicated by
blood sugar. Blood sugars will ﬂuctuate rapidly with binging and purging
behaviors. For those with diabetes who develOp eating disorders, the
condition may be a result of the combination of a restricted diet, feelings of
deprivation leading to binge eating, and weight gains that result from
excessive insulin (Marcus & Wing, 1990; Pcveler, Fairbum, Boller, &
Dunger, 1992; Polivy & Herman, 1985; Polivy, Herman, Olmsted, &
Jazwinski, 1984; Stacin, Linke, & Reuter, 1989; Steel, Lloyd, Young, &

Maclntyre, 1989; Steel, Young, Lloyd, & Maclntyre, 1989).

35

Individuals with IDDM and eating disorders may manipriate their
weight by their use or nonuse of insulin. Although it is dangerous, reducing
or eliminating insulin causes a person with IDDM to lose weight rapidly.
Insulin is the key that opens up the cell to allow the calories inside to be used
by the cell for energy. Calories pass through the body quickly when insulin is
not present, glucose accumulates in the blood, is ﬁltered through the kidneys,
and the calories are spilled out in the urine (Butler & Wing, 1995).

In many women, particularly young wonen, the goal to be attractive
and thin is taken to extremes. Tolmach and Scheer (1984) found that women
are more willing to physically and mentally harm themselves to achieve
weight control than men. Furthermore, Stancin (1989) found that women
with IDDM often use insulin restrictions for weight control. In a study of 93
women with IDDM 18-30 years old, 40% reported reducing insulin as a
method of weight control (La Greca, Schwartz,& Satin, 1987).

Weight control is an issue for both adolescents with and without
diabetes. Thinness is a cultural norm in the United States. Although it is
unclear whether there are greater numbers of teens with diabetes who have
eating disorders than those without diabetes, it is clear that preoccupation
with thinness for the adolescent with diabetes can and often does result in

serious health risks. Inappropriate manipulation of diet and/or insulin can

36

lead to hospitalization or coma or even death. More females than males are
likely to risk their health to get and remain thin. This is probably due to
different social norms for male and females. The quest for thinness with a
disregard for health may be one of the most difficult problems to address and
change for the adolescent who has diabetes. Issues, such as, societal
expectations, peer pressures, and identity development must be addressed in
order to change behavior and free a members of this group from concerns
over their weight and allow them to focus on appropriate diabetes care.
Family (Mme and Dmamics

It is important to acknowledge the role of the family, particularly the
parents (Bowman, 1985) in the care of diabetes for the adolescent. The
family stress levels, parental support and involvement, parenting style,
conﬂict, mother and daughter relationships, and responsibility all play a role
in the care that the teen receives.

Stress

 

Stress in a family often has a negative impact on the adolescent with
diabetes. In a study with 12 adolescents ages 15 to 18 years old, Mengel,
Lawler, Volk, Viviani, Dees, and Davis (1992) found that increased parental
stress resulted in poorer diabetic control. All already stressed family may be

more susceptible to the impact of diabetes. One study indicated that those

37

families from lower socioeconomic levels with marital difficulties had a
higher prevalence of psychiatric difficulties following the diagnosis of
diabetes in the family (Kovacs, Feinberg, Paulauskas, Finkelstein, Pollock, &
Crouse-Novak, 1985). However, several studies indicated that after the
initial adjustment, adolescents and families are generally able to cope
adequately with diabetes care (Jacobson, 1996; Jacobson, Hauser, Wolfsdorf,
Houlihan, Milley, Herskowitz, Wertlieb, & Watt, 1987; Kovacs, Brents,
Steinberg, Paulauskas, & Reid, 1986; Kovacs, Finkelstein, Feinberg, Krous-
Novak, Paulauskas, & Pollock, 1985).
Parental Support and Involvement

Parental support and involvement is another important factor in
managing diabetes care. The skill level of the families as they cope with
diabetes is important. Diabetes demands much attention to detail and having
a schedule can assist in incorporating the procedures needed to control
diabetes. In a longitudinal study of 9 to 16 year olds who had been diagnosed
as having diabetes within the previous year (Wertlieb, Hauser, & Jacobson,
1988), the children with diabetes who perceived their families as being highly
organized demonstrated fewer behavioral problems. A family with structure
was perceived by the adolescent to have assisted the teen in their adjustment

to diabetes. Parental support was directly related to adherence to diabetic

38

care and the younger the subjects the more compliant because the parental
support was greater as shown in a study by Hanson, Henggeler, and Burghen
(1987) of 104 adolescents. It is logical that parents would be more involved
in diabetes care with younger children than older ones as it is easier for
parents to inﬂuence the environment and care of younger adolescents. Older
adolescents are encouraged to take an active role in their diabetes care.
Furthermore, older adolescents may rebel against parental involvement, and
parents may have less control of older adolescents.
Parenting Sgle and Conﬂict Resolution

Parenting style and the way conﬂict is resolved in the family also
impacts how the adolescent with diabetes controls their disease. Historically
work has been conducted on problems in families who have a child with
diabetes with particular attention to the importance of family functioning and
conﬂict (Baker, Minuchin, & Rosman, 1974; Minuchin, Baker, Rosman,
Liebman, Milrnan, & Todd, 1975). Marrero, Lau, Golden, Kershnar, and
Myers (1982) noted that adolescents (13 to 18 year olds - 16 males and 24
females) with IDDM who perceived their parents as dominating and
controlling had poorer metabolic control while those who perceived that they
had a positive relationship with both of their parents and that both of their

parents supported their autonomy, demonstrated good metabolic control.

39

Better family cohesion and ability to resolve conﬂict were correlated with
good control at one and four years post IDDM onset for adolescents (Hauser,
Jacobson, Lavori, Wolsdorf, Herskowitz, Milley, Bliss, Wertlieb, & Stein,
1990). It is very clear that parenting style, including positive conﬂict
resolution and support for autonomy aids adolescents in managing their
disease. Perhaps diabetes care becomes a tool in the power struggles
between adolescents who strive for autonomy and parents who strive for
control. Those families with positive communication patterns who allow their
teenagers age-appropriate freedom may avoid power struggles in general and
the use of diabetes as a weapon.
Mother and Daughter Relations_hlps

The type of relationship between mothers and adolescent daughters
seems to be critical. There have been several studies looking at this
relationship and how it impacts both the mother and daughter. One study by
Bobrow and AvRuskin (1985) involved a diverse group of 50 adolescent
females ( 12 to 17 years old - 17 White Protestant, 15 White Catholic, 8
Jewish, 7 Aﬁican Americans of various religious backgrounds, and 3
Mexican American Catholics with incomes ranging from $7,000 on public
assistance to $60,000 a year). The study indicated that there was a great deal

of conﬂict demonstrated between mothers and their daughters who had

40

diabetes. The less adherent the adolescent to a diabetic regimen, the more
negatively charged was the mother-daughter relationship. Mothers who
frequently challenged daughters with unacceptable behavior or lying often
escalated the conﬂict, and this usually resulted in the adolescent withdrawing.
It is unclear whether the mothers and their daughters would have conﬂictual
relationships without the diabetes, and whether the conﬂicts were the sole
result of noncompliance to diabetes care.

In another study of the mother daughter relationship, compliance was
better in younger girls if the mothers had taken an active role in concrete
tasks and supervising the management of the treatment in a study of 12 to 17
year olds by Bobrow, Ruskin and Siller (1985). Hauenstein, Marvin, Snyder,
and Clarke (1989) studied 25 mothers of children who had diabetes. The
mothers felt that they were less attached to the child with diabetes, perceived
themselves as less healthy, and received less support ﬁ'om husbands than did
a control group of 21 mothers of children without a chronic illness

The research on the mother-daughter relationship indicates the
possibility of a circular relationship in which the diabetes negatively impacts
the adolescent. This may accelerate the conﬂict between mothers and

daughters. Because mothers are generally caregivers of the children in

41

families, the teenage girl may feel rejected and feel that they have lost a part
of their support system by the increase in conﬂict with their mother.

Although there are many difficulties in adjusting to diabetes, the
situation is not hopeless. A few studies demonstrated that adolescents who
have difficulties coping with the adjustment of IDDM respond well when
taught in a group setting how to respond to problems surrounding diabetes
(Bembaum, Albert, & Brusca, 1989; Marrero Myers, Golden, West,
Kershnar, & Lau, 1982; Padgett, Mumford, Hynes, & Carter, 1988). This
highlights the importance of including the family in the adjustment to diabetes
care.

Responsibility

An important component of diabetes care is that of parental
responsibility. Again, in our society, it is generally accepted that a parent is
responsible for the care, of their minor child which includes medical care (Mc
Cormick & Brooks-Gunn, 1989). Many adolescents are able to actively
participate in their own diabetes care and parents are usually encouraged to
allow them to take charge of the components which they are able to conduct,
such as giving injections. There is no standard to base a shift from parent-to
adolescent-orchestrated care. A child may be able to administer their own

shots at 10 to 12 years of age (or even younger) but not be willing to take

42

over this task until they are well into their teen years. The complexities of the
responsibility for care are reﬂected in the fact that adolescents, parents, and
professionals are unable to agree on what is an age appropriate shift in the
responsibility. In a study of 490 subjects by Wysocki, Meingold, Abrams,
Barnard, Clarke, Bellando, and Bourgeois (1992), both parents and
adolescents (3-19 years old) rated lower levels of abilities to care for diabetes
than the professionals. Professionals believed that the children were capable
of managing certain skills at older ages than the parents. These skills
included the ability to anticipate and plan for hyperglycemia, adjusting insulin
appropriately, checking for ketones in the urine, checking the quality of
insulin, recording test results, and dietary planning at restaurants.

In a review of the clinical and empirical evidence, Follansbee ( 1989)
concluded that age alone is not the best indicator of when to give the
adolescent the responsibility of self-care. Some of the other factors that seem
to impact good management or compliance are knowledge, cognitive
complexity, locus of control, organization of family, actual performance by
the adolescent, perceptions of the adolescent about what he/she feels willing
to do, as well as how well these perceptions match the caregiver’s perception
of what the adolescent is able to do. Follansbee concludes that all these

factors must be taken into account when trying to accomplish successful

43

management or compliance. It may be difficult for parents to assess all of
these factors to determine the correct age for allowing the teen to manage
their own diabetes. Moreover, teenage behavior is often erratic. Testing
blood sugar may be a skill that is easily learned by an adolescent yet not
conducted as social engagements take precedence.

The physical ability to conduct diabetes care is also complex. To
demonstrate the difficulties, in observations of 6 to 18 year olds (Epstein,
Cobum, Becker, Drash, & Sirninero, 1980) it was found that 54% of their
judgments about urine testing alone were in error. Urine testing is a fairly
simple test involving dipping a color coded chemical strip into urine and
matching the color to those on the test strips bottle. This is used to determine
if ketones are present and determines the need for treatment, particularly in an
ill child. In the range of procedures that help to maintain diabetes control, the
urine test is fairly simple. This study suggests that more complicated
procedures may also be conducted incorrectly and interfere with diabetes
care.

Physical ability to conduct the procedures and emotional maturity to
accept the responsibility are both part of the process of diabetes care.
Common sense tells us that an older adolescent may be more capable of

caring for diabetes than one who is younger. While one study indicates that

44

transferring older adolescents (16-18 year olds) to an adult focused diabetes
program does not appear to negatively impact their diabetes control (Orr,
Fineberg, & Grey, 1996), a study of even older individuals (Dunnings, 1995)
who were 17-34 years old noted that of the 59 young adults who responded
to a questionnaire, only 68% tested their blood at least once a day and 12%
never tested their blood. It is impossible to maintain adequate control over
diabetes with blood tests only accumulated once a day or not at all. Blood
sugars ﬂuctuate throughout the day and multiple tests over the course of 24
hours allows the medical provider or family to alter insulin to accommodate
the adolescent’s ever-changing needs. The very important Diabetes Control
and Complications Trial (DCCT) conducted on many adult subjects to
determine whether more frequent attention to diabetes made a difference,
conﬁrmed that more increased daily testing and frequent injections
contributed to much better diabetes management (DCCT, 1988).

Daneman (1991) recommends that parents remain involved with their
teenager’s diabetes care.

Finally, I advise you to remain involved ill your child’s diabetes care

and know what is going on both as you transfer control and afterwards.

Just because parents decrease their role in diabetes management does

not mean that the youngster automatically assumes it (p. 66).

45

For all adolescents, the impact of family interactions is signiﬁcant. For
the adolescent with diabetes these interactions can alter their health status
from being relatively healthy to being in a hospital, having long-term
complications, or even dying. The above studies have shown that stress,
parental support, parental involvement, parenting style and conﬂict, and the
relationship between mother and daughter all have an effect on how well
teens can manage their disease and how compliant they are in following the
steps to manage their disease.

Responsibility for the management of the disease is a family decision
that signiﬁcantly impacts teens with diabetes. Although there are no “hard
and fast” rules about ages that teens should take responsibility for the
management of their disease, there are guidelines that indicated by the
studies. They are: 1) maturity levels are more important than age levels; 2)
responsibility should be shifted gradually from the parent to the teen; 3) some
parental involvement even into the late teens can be beneﬁcial. The
qualitative data portion of this research project is designed to provide more
information on responsibility.

Because diabetes is such a complicated disease that requires constant
adjustment, monitoring, and administration of management techniques, family

involvement and participation is critical. Disorganized families with poor

46

parenting skills who are unable to accept responsibility for their children’s
behavior usually leads to disastrous results for the adolescent with diabetes.
Communiy Context

Access to Medical Care

To further clarify an attempt to understand the management of diabetes
ill adolescents, the medical care must be considered. Access to health care
and compliance to medical regimes are two very relevant features. Access to
health care is listed as one of the most important aspects of care by Bowman
(1985). Health care resources are not always available because of a lack of
insurance or geographic access. Some families do not have health insurance
to provide for the health needs of their family members. Many health
insurance policies have copays or do not cover medical supplies. Likewise,
although a family may qualify for Children’s Special Health Care Services (a
form of Medicaid for children with chronic illnesses), this is income
dependent and often mandates that families pay a portion of the costs of the
insurance. Because of the high cost of test strips for HBGMs, families may
pay of out-of-pocket costs for these strips. Despite access to health care
through insurance, the geographic availability can be another barrier. For
example, in rural areas there may not be a clinic where diabetes specialty care

is available nor other teens who have diabetes to provide peer support.

47

Access to health care is an important community and societal issue hat
has not been resolved. Resources may not be available to provide specialized
diabetes care to all of the teens affected. Individual worthiness to have
available health care is also being challenged as we decide who will be
included and eliminated in health care coverage when there are limited
resources. Our society is in the process of making decisions about this as we
shift to a system that utilizes managed health care. The debate continues as
to whether health care is a right or a privilege. The next few years may be an
era of great change for those with chronic illness as decisions are made that
impact their ability to access and afford care.

Compliance

Compliance has several components. There are individual issues,
family issues, health provider issues and societal issues. This section of the
paper, although dealing brieﬂy with the individual and family issues, focuses
on the health care issues of the health provider and the society in the area of
compliance.

Amiel, Sherwin, Sirnonson, Laur'tano, and Tarnborlane (1986) suggest
that insulin resistance occurs during puberty in both normal children and
children with diabetes and the combined effects of puberty and diabetes on

insulin action may help explain the difficulty some adolescents have ill

48

maintaining control of diabetes. However, it is difficult to determine whether
true insulin resistance is the case, as those adolescents who become ill ﬁ'om a
lack of insulin may be rebelling by omitting insulin. In a study conducted by
Golden, Herrold, and Orr (1985) with 44 pediatric patients with diabetes,
70% of the children who were in recurrent diabetic ketoacidosis (RDKA)
were shown to not be taking their insulin, and two thirds of the group
admitted to not taking it. Compliance improved signiﬁcantly when another
family member took over the responsibility of giving the insulin.

In some studies, these noncompliant teens wOuld have appeared to be
insulin resistant. Modern laboratory testing may allow for a more timely
determination of the difference between noncompliance and insulin
resistance, and future studies may allow health care providers to alter diabetes
regimens or confront noncompliant teens.

Noncompliance presents as a signiﬁcant social dilemma to health care
providers. Studies of adults indicate that those with chronic illnesses often do
not fully follow the advice of their physicians (Stewart & Sullivan, 1982). To
continue to treat a rebellious teen who refuses to adhere to medical
recommendations may imply an acceptance of their negative behaviors and
later may set the stage for a community reaction as the patient suffers long-

terrn, permanent physical effects, such as kidney failure. There may also be a

49

societal reaction as the government must absorb the extensive cost of treating
the individual who may be permanently disabled from what may be deemed

their own decisions of neglecting their diabetes care. Society may decide that
they are unwilling to support individuals who knowingly damage their bodies.

Conversely, there is a moral and ethical dilemma with discharging a
noncompliant adolescent from health care. First, there may be no alternative
health care available within the geographic region. Second, as stated
previously, our society generally holds parents responsible for their minor
child’s care, including health maintenance. When a parent refuses to take
over the diabetes management for a minor who is unable or unwilling, the
child is then punished through rejection and a lack of medical care when the
parent may actually be the legally and morally responsible party.

The health care provider is then in a precarious position which may
place them in the interface between the family and society. The health care
provider may be deemed by society to be responsible for the overall health
management of the adolescents with diabetes, particularly in this era of
managed care. Struggling with societal and parental demands may place an
unrealistic burden on the health care provider and certainly add complexities
to policy decisions, such as allowing a physician the ability to discharge

noncompliant patients.

50

It is important to note that the issue of compliance has strong ethical
and moral implications, particularly for the adolescent. Patient self-
determination plays a role in that it is often left up to the patient or family to
decide on the degree of willingness to comply with medical
recommendations. Furthermore, quality of life versus adherence to medical
regimens should be included in a decision. While compliance is an important
feature of this discussion, time does not permit for the topic to be given
adequate justice.

In the qualitative portion of this study, questions 11 and 14 address
compliance. It is difficult to assess whether teens skip insulin doses or avoid
blood testing. However, wherever possible, it is important to assess how
often this happens and the possible motivations for the nonconfonnance.

Access to health care through ability to pay and geographic location
are important factors in a community and in society to provide for its
members. This inﬂuences the economic climate as well as the included moral
and ethical dilemmas. This is complicated by the compliance or
noncompliance of patients that receive medical care within the community.
These features impact decisions that are made regarding providing health care .

and must be considered in future policy decisions.

51

Summgy

Review of the literature seems to indicate:

1. Adolescence is a time to resolve the conﬂict between autonomy and
dependency and is often a time of physical and emotional crisis.

2. Peer pressure plays an important role in the deveIOpment of the
teen.

3. Adolescent girls are more concerned about appearance than
adolescent boys.

4. Newly diagnosed IDDM adolescents often are depressed.

5. Teens who have good communication and conﬂict resolution skills
are usually better able to control their diabetes.

6. Weight issues are of major concern to teens particularly female
teens, and insulin can cause weight gains. Whereas, misuse of
insulin can cause weight loss.

7. Stress in a family often has negative impacts on the adolescent with
diabetes.

8. Parental support and involvement are important factors in managing
diabetes

9. Teens who see their parents as supportive manage their disease

better than teens who do not see their parents as supportive.

52

10.The mother-daughter relationship is important in the management of
the disease.

11.The age when the teen can take responsibility for managing the
disease varies from individual to individual.

12.Geographic and ﬁnancial access to medical care impacts how well
the teen is able to manage the disease.

13.When adolescents do not manage their disease there is a signiﬁcant
impact on the individual, in the family, by the health providers and
in the society.

In this literature review, it is evident that many factors impact the

adolescent with diabetes. A summary of the literature referenced in this

document is found in Appendix A.

CHAPTER III
RESEARCH DESIGN
Introduction

This chapter explains the research design. In this exploratory project,
there were many complex facets and the research included quantitative and
qualitative components. They will be presented separately for ease of
understanding the information. The quantitative data were drawn from an
intense chart review which compared male and female adolescents by age
grouping. The qualitative data were drawn from interviews of adolescents
who were shown to be in poor and good control of their diabetes, according
to the quantitative data. These interviews were undertaken to compare and
contrast their situation for a better understanding of what was taking place in
their lives in hopes that information would be derived that might contribute to
better diabetic control. Included here are the speculations underlying this
research in the form of the hypotheses and the use of the literature for a
fi'amework.

Quantitative Data

Quantitative data were gathered to determine differences in adolescents

and provide a framework to explore what was occurring in regards to diabetic

control among the teens.

53

Recording of Data

This included their birth date, gender, type of insurance, date of diagnosis,

54

Charts were reviewed to determine demographic data on each subject.

geographic location, whether they had another illness, and each glyco result

that they obtained. The dependent variable, indicated in Table 1 as "Total

Glyco" involved averaging the subjects glycos and utilizing this mean as a

judge of degree of control over their diabetes.

Table l-Example of Recording of Quantitative Data .

 

SUB

DATE
OF
BIRTH

INSUR

DATE
OF
DX

OTHER
ILLNESS

ZIP CODE.

CIRCUS

TOT

GLY

 

Fl-18

 

11-10-78

 

 

 

 

 

48912

 

9.2

 

10.9

 

 

 

10.1

 

All information was taken from 1996 data. Table 1 shows the format in

which the information was recorded for the ﬁrst female subject who was 18

years old. First, subjects were recorded by gender ("F" or "M"), and an

identifying number was assigned to each subject within the age and gender

category. Second, their date of birth was noted to conﬁrm their age and to

compare it to the date of diagnosis. Third, insurance was noted as "P" or

"N" to indicate that subject paid ("P") some portion of the costs of attending

the clinic or did not pay ("N") any costs but all the costs were billed to their

 

55

insurance. Fourth, the date of diagnosis was recorded and those who were
diagnosed with diabetes less than one year were eliminated from the study as
explained ill a subsequent section on subject exclusion. Fifth, those with
other chronic illnesses were noted, and they were also eliminated from the
study. The reasons for this elimination are also discussed more fully in the
section on "Subject Inclusion and Exclusion". Sixth, zip codes were recorded
that indicated geographic location of the subjects. This was done to
determine whether subjects had to commute long distances to receive medical
care. Seventh, individual glycos were recorded to assist in determining an
average and to see if there were patterns. Finally, an average glyco was
calculated and used extensively in this research.
Glycohemoglobins

State of the art in medicine currently determines overall control of
diabetes through the use of a single blood test drawn in a laboratory for a
percentage of blood sugar. This gives an average that represents a level of
control for a period of approximately 2 to 3 months (Anderson, et a1, 1994;
The DCCT Research Group, 1988). This blood sample is processed by a
laboratory test called the glycohemoglobin (glyco) or glycosylated
hemoglobin. This test is generally conducted on patients at the time of their

clinic appointments. The test is also indicated every 2 to 4 months to

S6

continuously monitor control of diabetes. The nondiabetic range (4.8% to
7.8%) shows that the patient has good control of their diabetes. At the MSU
Pediatric Diabetes Clinic, medical staff consider any number below 10% as
an indication of acceptable control of diabetes. The higher the number, the
worse the control. Patients whose percentages are 13% or higher are
considered to be in danger of diabetic ketoacidosis (in which sugar cannot be
utilized by the body and the patient risks going into a coma) and long-term
diabetic complications such as eye disease, nerve damage, and kidney failure
(BE. Wilson, personal communication, November 4, 1996).
Subject Inclusion pnd Exclusion

The subject pool for the quantitative data was identiﬁed from a list
generated by the MSU Pediatric Diabetes Clinic that included patients
between the ages of 13 and 18 years old who have diabetes. All subjects
who had another chronic illness were eliminated from the research as it was
too difficult to determine whether the other illness impacted the control of
blood sugars. For instance, cystic ﬁbrosis can induce diabetes in some
patients and control could be severely complicated by this disease.

Subjects with diabetes less than one year were not included. Research

indicates that there may be adjustment problems within the ﬁrst year, such as

57

depression difficulties. To avoid confounding the data. subjects were only
included if they had diabetes more than one year (Kovacs, 1979).

The ﬁnal n was 93. Since the outcome measure involved utilizing an
average of glycos, any patient without at least two glycos was eliminated
from any of the analyses that utilized averages, for a sample size of 77.
Collecting Data

After receiving human subject approval, and based on the list of
patients from the MSU Pediatric Diabetes Clinic, each chart was retrieved
and the demographic information and glyco results of 1996 were recorded as
previously noted. Several factors made this process complicated. Charts
were not always well organized and many had to be reviewed from front to
back to assure obtaining all relevant information. Information was sometimes
recorded in different places. For example, not all face sheets at the front of
the chart contained information on insurance so the MSU Clinical Center
computer system was utilized for current insurance carriers. Since glycos
were the outcome measure used to indicate control, it was especially
important to obtain all information on glycos. Some patients obtained glycos
at other locations because they were mandated by their insurance to utilize
the carriers' facilities. Results of these glycos were often not found in the

Laboratory Tests section of the charts and extensive medical dictations were

58

read to facilitate the attainment of some glycos as staff contacted the
laboratory, and physicians recorded the glycos at the subsequent clinic
appointment or dictations. Finally, some laboratories conduct their glyco
tests differently than the MSU Clinical Center laboratory and they obtained
different norms for the results. Alternative laboratory results had to be
converted to MSU Clinical Center Laboratory standards by medical staff to
assure comparisons of similar data on glycos. All of these situations made
the collection of quantitative data extremely time consuming.
Qualitative Data

In the study of adolescents with diabetes, it is important to understand
the ﬁrnctioning of the child within the environment. Despite the enormous
complexities of adolescents with chronic illnesses and their families,
qualitative research is an important part of looking at individual ﬁrnctionin g,
performing within a family, the impact of the community, and ill this case, the
intricacies of health care. Qualitative research is helpful in understanding
information that is presented in words or pictures instead of mere numbers
(Daily, 1992). Many people and things impact teens in their attempt to
manage the diabetes, and it is difficult to assess what was taking place with
only quantitative information. This section explains the gathering of the

qualitative data.

59

As noted earlier, the adolescents' glycos were compared to determine
differences in males and females by age to show level of control of diabetes.
Based on the results of the information, subjects were recruited who were in
poor control (above 12%) and good control (less than 10%) to assist in
determining differences in their lives (See "Subject Inclusion and Exclusion"
for details).

Recording and Coding of Data

The qualitative data were coded to facilitate an understanding of the
adolescent's responses. Coding is a form of analysis (Miles & Huberrnan,
1994). Two forms of coding analyses were used in the qualitative portion of
this study. First, questions were individually analyzed by breaking down
responses into keywords. Categories were developed for each question to
cluster responses into similar classiﬁcations. Each subject's response was
then placed into one of the categories to assess patterns of responses.
Included in this clustering was a notation of poor or good control to maintain
an understanding of the responses for both groups.

Table 2-Sample of the Chart for Recording Qualitative Data

 

QUESTION 3 - In your experience, what is the most difficult part of having diabetes?

 

NO SWEETS NOT BEING LIKE DIFFICULTY IN TIME FOR
OTHERS SPORTS DIABETES
CARE

 

 

 

 

 

 

 

60

Table 2 demonstrates the method used for recording the qualitative data. It
shows that four basic responses were given to "Question 3". This format also
allowed for noting the number of subjects who responded each way.

The second type of coding involved analyzing subject's overall
responses by themes. For example, those subjects who utilized keywords
that expressed a sense of responsibility were noted by the use of the word
responsibility or a word or phrase that denoted the concept. These data are
presented in Chapter 4.

Meet Inclusion and Exclusion

The letters found in Appendix B or C were mailed or given to subjects
whose glycos were below 10% and above 12% to recruit for interviews. It
was decided that a small difference, such as that between 9.9% and 10.2%,
might not be a good reﬂection of a segregation of good and poor control. It
was hoped that by selecting those on more extremes of the continuum of good
and poor control, this would allow for a reﬂection of signiﬁcant differences in
factors that might impact control of diabetes in the subjects. It was
determined that a subgroup of 10 subjects (5 in good control and 5 in poor
control) would be recruited from the 77 who were analyzed in the quantitative

section. This offered more rich data on the lives of the subjects.

61

Participation of subjects for the qualitative portion was voluntary.
Flyers were mailed or given to subject's parents (Appendix B or C) which
offered an incentive of $10.00 for each subject's participation. Interestingly,
after the ﬂyers were distributed, those who initially responded to the request
for voluntary participation were mostly males (5 of 6) and in good control (5
of 6). Those in poor control (3 of 4) and more females (3 of 4) responded to
a second distribution of the same ﬂyer. Although the chart review in the
quantitative portion was based on the total population of adolescents at the
MSU Pediatric Diabetes Clinic, the subjects in the qualitative study were
totally voluntary in response to the ﬂyer that was distributed to their parents.
Recruitment was limited to a 60 minute drive from the MSU Clinical Center
in order to facilitate obtaining the information needed. All subjects beyond
this geographic range were not sent ﬂyers to solicit their input. This only
eliminated 13 subjects. The qualitative data were then generated fiom a
somewhat selective group of adolescents as it did not include those a
signiﬁcant distance from the MSU Clinical Center (which might have
eliminated some rural subjects), did not include those in moderately poor or
good control of their diabetes (with glycos in the 10.1 to 11.9 range), and

obviously was self-selective as subjects chose to participate. This might

62

mean that subjects with extreme behaviors, such as those who never test
blood sugar numbers did not volunteer and, were not well represented in this
sample.

At the beginning of the interview, subjects were assured that the results
of their answers would not be shared with the staff at the MSU Pediatric
Diabetes Clinic nor parents so that they would feel free to provide accurate
information. This was done while the researcher reviewed the permission
form (Appendix D) with the parent and adolescent. The form was read to the
adolescent and parent prior to the interview and both signatures were
obtained except for the case of the 18 year old subject in which the parental
signature was not necessary. Therefore, all precautions were taken to assure
conﬁdentiality so that subjects would feel free to be as honest as possible.

The possibility of an ethical dilemma for the health care professional
may present in this type of research when an adolescent answers questions
and reveals they are participating in behaviors that are harmﬁll. For example,
a teen may report that they frequently miss shots of insulin which will lead to
severe health problems. Ideally, research will be conducted which allows
subjects to give honest responses to questions to allow the researcher to
obtain accurate information. In the case of imminent danger, when the

subject reveals information that requires immediate intervention, such as the

63

case of suicidal behavior, the researcher is obligated to seek help for the
adolescent so that they do not die. However, this situation did not arise in
this interview process. In this research, physicians are well aware of the level
of control of the diabetes as demonstrated in the glycos of the subjects, and
the staff at the MSU Pediatric Diabetes Clinic are involved in on-going
contact with the parents to assist with better diabetes control.
Interviews

Interviews were conducted in the clinic and in the home of those who
volunteered. These took about 60 minutes to complete. Subjects were asked
questions from a preselected group of open-ended questions (Appendix B).
All interviews were audio tape recorded. Based on the results of the chart
review and quantitative analysis, interviews were organized to assist in
determining what was taking place in the lives of the adolescents. Open-
ended questions were generally designed to obtain information from the
subjects about various aspects of their lives but directly and indirectly related
to diabetes.

Questions 1 and 2 were asked to determine when the patient was
diagnosed and what they remembered about the situation. These were
designed to get the subjects talking and comfortable with the researcher.

Questions 3 through 7 were about caring for the diabetes and were used to

64

determine who played a role in caring for the diabetes and the patient's
understanding of the disease and its control. Numbers 8 through 13 were
intended to obtain information on difficulties that might play a role in control,
such as the most difficult part of having diabetes. Because of literature
reference to problems with anorexia and bulimia in adolescents with diabetes,
questions 14 through 16 were used to assess possibilities of eating disorder
behavior. Question 17 was included to determine restrictions relative to
diabetes. Because exercise is important for anyone with diabetes, question 18
was used to ascertain activity levels. The ﬁfth section, questions 19 through
23, was asked to establish those who play a role in the support of the research
subjects. Questions 24 to 26 were included as medical care is so critical to
diabetes management. It was presumed that if patients had other health care
providers or particularly positive or negative feelings toward medical care,
this might inﬂuence their willingness to seek help from physicians or medical
staff. Finally, questions 27 to 29 were especially designed to allow the
adolescents to speak openly about their situation and provide general
information on their lifestyles and struggles in the care of diabetes. At the
end of the interview, all subjects were offered an opportunity to include any

other information that might not have been addressed in the questions.

65

In response to the ﬂyer, parents left messages on a telephone that had
an answering machine. They were called back based on their responses and
interviews were set up at mutually agreed upon times. Interestingly, most of
the subjects (8 of 10) expressed gratitude at having an opportunity to express
their views at the time of the interviews. They reported pleasure at being
allowed to tell their story and while they gladly accepted the $10.00 stipend,
they expressed enjoyment of the process.

Hypotheses

This research is an exploratory project that involved reviewing patient
charts to assess differences and similarities in adolescents with diabetes and
conducting interviews to enhance the results. There were ﬁve hypotheses that
were developed at the time of this study. These hypotheses are given in
Chapter I. These hypotheses involved speculations on gender and age
differences in controlling diabetes, included length of time subjects had
diabetes, and number of glycos obtained during the year.

Summm

The chart review provided information on the tangible aspects of
diabetes care for the adolescent. This information was enhanced by the use
of open-ended questions to determine more intangible aspects, such as the

adolescent's struggles, perspectives, and supports. The analyses of the data

66

are presented in Chapter 4. Chapter 5 provides a synthesis through a
discussion of the results and how these are relate not only to existing research

provided in the literature but also how they might guide future research.

CHAPTER IV
RESULTS
Introduction

This research project stemmed from a combination of an intensive
literature search that revealed a lack of research on adolescents with diabetes
comparing gender and age issues, combined with clinical experience in which
adolescents as a developmental group appeared to have had a more difficult
time controlling their diabetes than younger or older patients. This
experience included staffs belief, at the MSU Pediatric Diabetes Clinic, that
adolescent females were having a more difficult time than males. This led to
the research presented here, which was comprised of a chart review with
statistical analysis and interviews, as an exploratory method of determining
what was taking place with adolescents attempting to control their diabetes.

Qpantitative Analysis

The statistical analysis involved looking at the data from several views.
Emphasis was on viewing the glycos as an outcome measure of control of
diabetes. As previously reported, the use of the glyco is well substantiated in
medicine as a gauge of the level of control of diabetes (Anderson, Anderson,
& Glanze, 1994; The DCCT Research Group, 1988, 1996). The glyco is a

blood test that is conducted by drawing blood from the arm in a laboratory

67

68

and the results show a percentage of sugar in the blood over a two to three
month period of time. This test is unlike the blood test that is conducted
through the ﬁnger poke done by the adolescent themselves which measures a
current blood sugar number and is analyzed by a portable blood sugar
machine about the size of a calculator (a glucometer). The blood sugar
obtained by the adolescent is important for adjusting current insulin doses.
However, the glyco is an accurate test of what is taking place over a two to
three month time period (Tate, Clements & Walters, 1992) and was used in
this study as the measure of control of diabetes. Ideally, a patient will have
three to four glycos a year. As previously noted, the national guidelines,
which are used at the MSU Pediatric Diabetes Clinic, are a range of 4.8% to
7.8%. This is the laboratory standard which indicates that the adolescent
with diabetes is controlling their diabetes so well that it is as if they did not
have diabetes and will be less likely to suffer diabetic complication
(Anderson, Anderson & Glanze, 1994; The DCCT Research Group, 1995).
The ﬁrst few tables depict demographic information about the research
sample who are adolescents with diabetes attending the MSU Pediatric

Diabetes Clinic. Subsequent Tables address the statistical analysis.

69

Demogzaphics

All subjects with any other chronic illness were eliminated. This
included diabetes induced by cystic ﬁbrosis and other conditions such as
congenital adrenal hyperplasia and hypothyroidism as any such disease
impacted the endocrine system and may complicate the control of diabetes.
Furthermore, it was determined that any other chronic illness might provide
excessive strain on a family system and complicate the quantitative data.
Patients with Type II diabetes were also eliminated, despite being
adolescents, as this is considered a separate disease from IDDM and was not
suitable for a comparison with this group. Table 3 represents the sample of
adolescents with diabetes included in this study who attended the clinic

Table 3-Subjects by Gender Categories

 

FREQUENCY PERCENTAGE

 

FEMALES 49 52.7

 

MALES 44 47.3

 

93

 

 

 

 

 

70

in 1996. All of the quantitative information was obtained from charts of
patients who attend the MSU Pediatric Diabetes Clinic. The ratio of females
to males is almost equal for a total of n=93, and the mean age is 15.35 years

old.

Table 4-Subjects by Age and Gender Categories

 

 

 

 

 

 

 

 

 

SUBJECTS FEMALES MALES TOTAL
BY AGE
n % n % n %
13 YEARS 10 20.0 10 22.7 20 21.5
14 YEARS 7 14.3 6 13.6 13 14.0
15 YEARS 9 18.4 7 15.9 16 17.2
16 YEARS 9 18.4 8 18.1 17 18.3
17 YEARS 7 14.3 5 11.3 12 12.9
18 YEARS 7 14.3 8 18.1 15 16.1
TOTAL 49 52.7 44 47.3 93 100.0

 

 

 

 

 

 

 

 

 

The adolescents in this study ranged ﬁ‘om 13 to 18 years old. There were 44
males (47.3%) and 49 females (52.7%) in each age group, and this is
reﬂected in Table 4. Again the ratio of females to males is fairly consistent

throughout the age groups.

71

Table 5 notes the frequency of subjects who receive average glycos. It is
interesting that less than 25% (23.4%) have glycos that represented ideal
control. Ideal control in this study is deﬁned as glycos below 10% as are
utilized in national guidelines (Anderson, et al., 1994; The DCCT Research
Group 1995, 1996; Tate, Clements, & Walters, 1992) . Individuals with
Type I diabetes who kept their glycos under 10% are less likely to develop
complications related to poor control, such as kidney disease, kidney failure,
eye disease, and blindness (DCCT Research Group, 1995, 1996). Of further
interest is that Table 5 also shows more than 25% (27.3%) of the adolescents
in this population had glycos over 13% which indicates very poor control.
The higher the glyco percent, the less the diabetes is in control and the more
likely the adolescent is to suffer complications ﬁ'om their diabetes in the near
future. Several studies note the use of the national criteria used to denote
ideal control. Ideal control in this study is deﬁned as glycos below 10% as
are utilized in national guidelines (Anderson, et al., 1994; The DCCT
Research Group, 1995; 1996; Tate, Clements, & Walters, 1992) . Individuals
with Type I diabetes who can kept their glycos under 10% are less likely to

develop long term complications related to poor control, as mentioned above.

72

Table 5-Frequency of Subjects' Glyco Range

 

 

 

 

 

 

 

 

 

 

 

 

 

GLYCOS FREQUENCY CUMULATIVE
PERCENT PERCENT
7.0-7.9 1 1.3
8.0-8.9 3 5.2
9.0-9.9 14 23.4
10.0-10.9 18 46.8
11.0-11.9 13 63.6
12.0-12.9 7 72.7
13.0-13.9 9 84.4
14.0-14.9 5 90.9
15.0-15.9 3 94.8
16.0-16.9 2 97.4
17.0-17.9 1 98.7
19.0-19.9 1 100.0

 

 

 

 

 

Poor control in this study is deﬁned as glyco averages over 10% while very
poor control is an average glyco over 13%. The lack of good overall control
is also seen in the mean glyco level of the subjects in this study which is

11.14% with a standard deviation of .262.

73

Table 6 depicts the categories that the adolescents were placed into to
divide them into early (13 to 14 year olds), middle (15 to 16 year olds), and
late (17 to 18 year olds). These categories were used in the analysis for a
comparison to see if one age group was in better or worse control and are
used extensively in this study.

In Table 6, 77 (83%) of the original 93 subjects in this study represent
those adolescents who received at least two glycos. The glyco levels for each
of the 77 subjects were averaged and used in the following comparisons and
statistical analysis. The 16 (17.2%) who were not included were those who
only received one glyco and were unable to have averages for comparisons.
Most of the statistical tests that were done were based on averages.

Table 6 Grouping of Male and Female Subjects by Age

 

 

 

 

 

 

MALES FEMALES TOTAL
11 % n % n %
EARLY (13-14) 14 35 13 3s 27 35
MIDDLE (15-16) 14 35 16 ' 43.2 30 39
LATE (17-18) 12 3o 8 21.6 20 26
40 100 37 77

 

 

 

 

 

 

 

 

 

74

Table 7 provides information on the number of glyco tests for the
subjects in this study, which covers 1996. As is noted, 16 (17.2%)
adolescents only received one glyco test. Only 40 (43%) of the 93
adolescents received what was considered an adequate amount of testing,

Table 7-Number of Glycos in 1996 Per Subject

 

 

 

 

 

 

NUMBER OF TESTS FREQUENCY PERCENT
1 16 17.2
2 37 39.8
3 35 37.6
4 5 5.4
93 100

 

 

 

 

 

which was three to four glycos a year (Anderson, et al., 1994; The DCCT
Research Group, 1995; 1996; Tate, Clements, & Walters, 1992).
Compliance in receiving glycos was especially poor with less than half of
these subgroups obtaining adequate medical care for their diabetes.

Table 8 and Table 9 represent information on this population in which
adolescents received glycos that were over 10% and at or over 13%. These
charts were separated into genders as it was speculated in the hypotheses that
there may be a gender difference. The data are presented by age categories

as this was part of the exploratory nature of this research. The numbers

75

represent raw data and percentages of individual subjects who received at
least one glyco over the given amounts. The 10% cut-off was given to show
those who received glycos over the 10% acceptable standard that was
presented earlier and clearly noted in the literature as an indicator of good
control. The 13% was given at the MSU Pediatric Diabetes Clinic to note
extremely poor control. As glycos go higher, the diabetes was in more poor
control and the risk of diabetic complications increased. These two tables (8
and 9) indicated the number of times the adolescent had at least one glyco
over the acceptable range in both poor control (10%) and extremely poor

Table 8-Females With At Least One Glyco Above 10.0% and Above

 

 

 

 

 

 

 

 

 

12.9%
SUBJECTS BY AGE TOTAL GLYCOS 10% GLYCOS OVER
SUBJECTS To 12.9% 12.9%
n % n %
13 YEARS OLD 10 5 50.0 3 30.0
14 YEARS OLD 7 1 14.3 2 28.6
15 YEARS OLD ‘ 9 1 11.0 4 44.4
16 YEARS OLD 9 4 44.4 4 44.4
17 YEARS OLD 7 1 14.3 4 57.1
18 YEARS OLD 7 3 42.9 3 42.9
TOTAL FEMALES 49 15 30.6 20 40.8

 

 

 

 

 

 

 

 

76

control (13%). For females, 15 of the 49 (30.6%) were in poor control, while
for the males 20 of 43 (46.5%) are in poor control. The far end of the
continuum was represented by 20 of the 49 (40.8%) females in extremely
poor control and 13 of the 43 (30.2%) of males in extremely poor control. Of
particular interest is that among 16 to 18 year old females and males, 71.4%
of this population had glycos over 10%.

Table 9-Males With At Least One Glyco Above 10.0%

 

 

 

 

 

 

 

 

 

and Above 12.9%
SUBJECTS BY AGE TOTAL GLYCOS 10% GLYCOS OVER
SUBJECTS TO 12.9% 119%

n % n %
13 YEARS OLD 10 4 40.0 3 30
14 YEARS OLD 5 2 40.0 I 20
15 YEARS OLD 7 4 57.0 1 14.2
16 YEARS OLD 8 5 62.5 2 25
17 YEARS OLD 5 1 20.0 3 60
18 YEARS OLD 8 4 50.0 3 37.5
TOTAL MALES 43 20 46.5 13 30.2

 

 

 

 

 

 

 

 

Also playing a role in the adolescent's ability to receive adequate
medical care may have been the availability of insurance. It was speculated

that this was particularly critical information in this instance as it may cost

77

$150.00 or more for the patient to be seen by the physician in the
subspecialty clinic for a comprehensive examination. It was presumed that if
families had to pay for medical services, that it may deter them from obtaining
medical care. Most of this population had adequate insurance coverage to
pay all medical expenses (71%) and only incurred travel expenses for all of
their clinic appointments. This included not paying any copays or
deductibles. The remaining 27 (29%) paid at least a copay or deductible with
no patients paying the entire cost of the visit (i.e., no insurance).

Data Analysis

The next section begins the information on the analysis of the data.
There are several different methods that were utilized to assist in
understanding this population in relation to their control of diabetes. An
ANOVA, several chi-squares and multiple regression analysis utilized to
analyze the data.

Table 10 shows the Analysis of Variance (ANOVA) with a 2 x 3
factorial design to test the main effects of gender, age, and the interaction of
gender and age. The effects for the interaction of age and gender were not
signiﬁcant [F(2.71) = .55, p=.58l]. These results show that the main effect for
gender was not signiﬁcant 11:11.71) = 1.08, p=.302] indicating that there were

no statistically signiﬁcant differences between males and females in their

78

glyco levels. The main effects of the three age groups (early, middle, late)
was not signiﬁcant [F(2,71)= 1.52, p=.226]. These nonsigrriﬁcant results show
no detectable differences in this population for age, gender and/or interactive
effects based on an ANOVA.

Table 10-ANOVA for Effects of Gender, Age, and Interaction of

 

 

 

 

Gender by Age
VARIABLES SUM OF DF MEAN F m. OF
SQUARES SQUARE F
GENDER 5.763 1 5.763 1.080 .302
AGE 16.189 2 8.094 1.517 .226
GENDER 5.835 2 2.917 .547 .581
x AGE

 

 

 

 

 

 

 

 

In the Chi-Square tests of Tables 11 and 12, the continuous outcome of
the average glyco was categorized into dichotomous variables of 10% or less,
and greater than 10%. These categories were utilized to determine if the
distribution of males and females was the same in both glyco level categories.
As indicated in Table 11, although there is a higher percent of females with
glycos over 10%, there is no signiﬁcant difference between males and
females in the glyco outcomes [x2(1)=.19, p=.659]. Although it is not

statistically signiﬁcant, it is interesting to note that about two-thirds Of the

79

adolescents have glyco levels greater than 10%, which again indicates that

overall their diabetes is not in good control.

Table ll-Chi-Square Results of Glycos for Males and Females

 

 

 

 

 

 

 

 

 

GLY COS FEMALE MALE TOTAL
EQUAL TO OR LESS 13 16 29
THAN 10% 35.1% 40.0% 37.7%
GREATER THAN 10% 24 24 48
64.9°/o 60.0o/o 62.3°/o
COLUNIN TOTALS 37 40 77
48.1% 51.9%) 100%

 

x2(,)=.19, p=.659

Table 12 utilizes Chi-Square to analyze the age categories (early, middle, and
late) and it reveals that there was an apparent similarity in the percent of low
glycos as the age group varied from early to late adolescents. The same
pattern existed for those with greater than 10% glycos. The distribution was
the same so there is no statistical signiﬁcance for Chi-Square for three age
categories with glycos equal to or less than 10% and greater than 10% [xzm =

.91, p=.63].

Table 12-Chi-Square Result of Glycos for Age Categories

80

 

 

 

 

 

 

 

 

 

GLYCOS EARLY MIDDLE LATE TOTALS
(13-14) (IS-16) (17-18)
EQUAL TO OR 10 13 6 29
LESS THAN 10% 37.0% 43.3% 30.0% 37.7%
GREATER 17 17 14 48
THAN 10% 63.0% 56.7% 70.0% 62.3%
TOTALS 27 30 20 77
35.1% 39.0% 26.0% 100%

 

38(2) = .91, p=.63

Part of this research involved looking at whether there was a

 

relationship between patients who must pay for services at the clinic and the
number of glycos that they obtained. It was speculated that cost may prohibit
receiving adequate medical care. Although it was not statistically signiﬁcant
[x2(1)=.94, p=.33], Table 13 showed interesting results. While those who had
to pay any money for services represented less than one-half (29.9%) of the
subjects, they only represented 25% of those who obtained three glycos
versus those who did not pay any fee who more frequently received three

glycos (75%).

81

Table 13-Chi-Square Results Of Payment and Nonpayment Of Services

 

 

 

 

 

 

 

 

 

 

by Number Of Glycos
PAYMENT 2 GLYCOS 3 GLYCOS TOTALS
NO PAYMENT 24 30 54
64.9% 75.0% 70.1%
MUST PAY FOR 13 ' 10 23
SERVICES 35.1% 25.0% 29.9%
TOTALS 37 40 77
48.1% 51.9% 100%
2 _ _
x (l)“-94, p—.33

The ﬁnal analysis, a Multiple Regression Analysis (Table 14), examined the
effects of the independent variables of gender, age, length of time having
diabetes, and the number of glycos conducted, and whether the insurance paid
or not on the average glyco level. Although the females had higher glycos,
this independent variable did not demonstrate any statistical signiﬁcance i131
= -.10 t= —.84, p =.40) For the age variable, the t test showed no statistical
effect on glyco levels (132 = -.08, t= -.64, p = .52). Length of time with
diabetes was an independent variable that also showed no statistical
signiﬁcance (B3 = - .00, t = -.02, p = .99). The number of glyco tests were not
statistically signiﬁcant ([34 = .-.03. t = -.23, p = .82). Finally, whether the
patient had to pay for some portion of the services or the insurance paid the

entire bill was not statistically signiﬁcant ([35 = -.O8, t = -.64. p =.53).

82

Table 14-Multiple Regression Analysis with Five Variables: Gender by

Age by Length of Time with Diabetes by Number of Glycos by Payment

 

 

 

 

 

 

VARIABLES BETA STD ERROR t SIGN.
BETA t
GENDER -. 101 .550 -.842 .403
AGE .078 .171 .635 .527
LONG .002 .072 .018 .986
NUMBER -.028 .462 -.230 .819
INSURANCE -.076 .598 -.640 .524

 

 

 

 

 

 

 

Findings by Hypothesis

This research project was an exploratory project that began with
assumptions about adolescents with diabetes. Each hypothesis was addressed
separately and related to the results of the ﬁndings from this research.
Hypothesis #1:

There will be differences between control of diabetes for adolescent
males and females, based on the results of their glycohemoglobins.
Quantitative Results:

There was no statistically Signiﬁcant difference found in control of

diabetes between males and females. An ANOVA and Chi-Square

tests were utilized to Obtain this information. These results were

83

complicated by the fact that, with one exception, 18 year old females

only had one glyco done a year, and those females were generally in

poor to extremely poor control. While there were no speciﬁc gender
differences, it is clear that the adolescents 111 this population were
generally in poor control.

Hypothesis #2:

There will be differences in age categories (i.e. early, middle, and late
adolescents) of males and females in control of diabetes based on the results
of their glycohemoglobins.

Quantitative Results:

Two separate Chi-Square tests were used and both did not demonstrate

any statistically signiﬁcant differences for gender or age.
Hypothesis #3

There will be differences in the interactive effects between age and
gender, based on the results of the glycohemoglobins.

Quantitative Results:
Gender, age and an interaction of gender and age did not reveal any

statistically signiﬁcant differences on an ANOVA.

84

Hypothesis #4:

There will be differences in gender for dichotomous glycohemoglobin
levels of equal to and less than 10%, or greater than 10%.

Quantitative Results:

A Chi-Square tests was conducted which revealed no statistically

signiﬁcant differences in glycohemoglobins for dichotomous levels of

equal to and less than 10% versus greater than 10%.

Hypothesis #5:

There will be differences in gender or age categories for independent
variables of gender, age, length of time with diabetes, number of
glycohemoglobins obtained, and whether patients paid for services.
Quantitative Results:

A Multiple Regression Analysis indicated no statistically signiﬁcant

differences in glycohemoglobins for subjects for gender, age, length of

time with diabetes, and number of glycos Obtained and payment for
services. Despite these results, again, an anomaly presented when the
recorded data showed that the 18 year Old females in this study were
generally only obtaining one glyco test per year and that those single
tests were generally in the range of poor control to extremely poor

control.

85

Qualitative Analysis

The qualitative analysis was designed to enhance the information in the
quantitative research. Interviews of subjects were conducted to determine
factors that played a role in control of diabetes, considering both intemal and
external inﬂuences. Five subjects in good control and ﬁve subjects in poor
control of various ages and from both genders were interviewed. Interviews
were used to obtain a broad perspective from different ages and genders. The
ﬁrst method of analysis consisted Of utilizing a form (Table 2) that allowed
for systematically coding and clustering answers to compare and contrast by
category of the answers. The second method involved looking for themes in
each subjects set of responses.

For the ﬁrst portion, each question was recorded on a separate sheet of
paper. Table 2 shows how answers were recorded by topic and negative or
positive aspects of the topic.

Each question was put into this format of a table with answer
categories. These were derived from the same categories used to cluster
similar interview questions and are presented topically in this section. This
assisted in determining not only categories of answers but also the number of
subjects who responded similarly. There was no limit placed on categories.

If each subject had answered the question differently, there would have been

86

10 columns for the answers. However, this was not utilized as most subjects
shared similar answers with others. This method resulted ill the following
analysis. A good deal Of relevant information was gleaned from this process
and is presented in categories for clarity.
gape of Diabetes
0 All subjects, regardless of level of control, conducted their own
blood sugar tests, shots, and drawing of insulin with the exception
of one 13 year old female (in good control) who had her mother's
input on drawing insulin and occasionally giving shots, and one 13
year old male (also in good control) who discussed insulin
adjustment with his mother.
Insulin Adjustment
0 Of those who adjusted their insulin only when they had a clinic
appointment at three or four month intervals, all three subjects (one
male and two females) were in poor to extremely poor control.
0 The most frequently used pattern of insulin adjustment was that
subjects (two in poor control and three in good control) changed
their overall dose infrequently (less than once a month) but

supplemented their regular insulin when their blood sugars were

87

high. They gave the supplement because their current blood sugar
number was too high.

0 One subject (in good control) changed insulin based on patterns of
highs or lows as is the standard recommendation for ideal control
by the staff of the MSU Pediatric Diabetes Clinic.

0 Although in good control, one subject (male) changed his dose
constantly (at least once a day) based on his current blood sugars,
which was contrary to medical advice.

Control Levels

0 Eight of the 10 subjects knew their level Of control or glyco level.

0 Two subjects, in poor control of their diabetes (one male and one
female), were totally inaccurate about their control based on the
glyco averages, reporting that they had good control when they
were in extremely poor control. This information was always
reviewed with the patient and parent at the clinic visits so they
should have been aware of their glyco levels.

MDifﬁcult Part of Having Diabetes

0 The two most common difficult components of having diabetes

were reported as abstaining from sugary foods (three subjects);

being different ﬁom peers (two subjects), and a combination answer

88

of abstaining from sugary foods and being different from peers (two
subjects) for a total of seven of the 10 subjects (70%).
o The remaining three subjects reported that the most difficult part of
having diabetes was the time it took for diabetes care.
Missing Insulin
Most subjects reported missing shots with six of 10 (60%) only missing a
Shot occasionally. One subject (in good control) reported never missing a
shot. Predictably, the three subjects who most frequently missed shots (one

or more missed shots a month) were those in the poorest control.

Inaccurate Reporting of Blood Sugar Numbers

 

o All of the subjects who were interviewed reported that they had lied
at some time about their blood sugar results with ﬁve citing the
reason as their desire to eat sugary foods and ﬁve giving a reason to

avoid conﬂicts with parents or doctors.

o All but two subjects (those in extremely poor control) worried about.
having diabetes with their main concern respectively given as going
blind, developing kidney disease and heart problems, and one
subject included not being able to get pregnant or have a healthy

child.

89

Body Image

All 10 subjects reported being satisﬁed with their looks.

Five of the 10 subjects expressed satisfaction with their weight but
these were all males.

All four of the females expressed some level of desire to lose
weight.

One male expressed a desire to lose 10 pounds but this was so that
he could participate in a sports activity that required him to ﬁt in a
Speciﬁc weight category, not because of a concern for his
appearance.

All four of the females and the one male who wanted to lose weight
reported that they would not become involved in disordered eating
behaviors (i.e., purging or restricting) as they were concerned about

the effects of this behavior on their blood sugar numbers.

Restrictions

0 Four of the 10 subjects reported that diabetes did not restrict their

lives in any way.
Four of the 10 subjects reported that it only placed restrictions on

their ability to eat sugary foods.

90

0 Two reported missing out on some normal childhood functions (a
sleepover and an overnight ﬁeld trip) because no one was able to
monitor the diabetes in case of a low blood sugar reaction.

0 One Of the 10 subjects (a male in good control) wanted to reduce
his weight to participate in sports but felt restricted from doing so
because he was aﬁ'aid of being unable to control his low blood
sugars and passing out during the sports activity. Prior to his
diabetes he had participated in extreme methods of weight loss,
including completely restricting food for 24 hours and longer and
excessive exercise.

The responses pointed out that six of the ten subjects did not feel restricted by
diabetes except for their inability to eat sugary foods.

31.19995

0 Mothers were listed as the most inﬂuential support person by six of

the 10 subjects (60%)
Two of the 10 subjects listed their mothers and fathers as equal ill supporting
and assisting them despite the fact that one of these subjects had a father who

was not in the home because of a divorce.

91

Themes That Presented in the Interviews

The second portion of the qualitative analysis involved viewing the
overall responses of the subjects for themes. This was particularly important
when comparing those in good and poor control and is presented below.
Good Control

Regardless of age or gender, those adolescents in good control had
distinct themes of positive coping strategies and attitudes as follows:
Personal Responsibility

0 "It is a very big responsibility and needs to be taken care of very
carefully."

0 "There will be things that they want to do and they'll want to be able
to help themselves and not be reliant on Mom and Dad all the time,
or the Guardian. They need to be self-reliant. By the time they are
driving, they should be in total control before that."

0 "I’ve done a hands-on demonstration and have people go up and
test. It shows them what is going on. I explain it to my teachers -
what is going on - so they would know."

Acceptance of the Disease
0 "It's serious, control is important, not just in the future, but every

day, and I feel good when I have good control."

92

0 "That it is okay. It's not the end of the world. You have to deal
with it. You have to balance what you eat and take good care of
yourself."

Positive Attitude

o "It really doesn't affect your life other than the fact that your blood
sugar doesn't stay normal."

0 "That it's not bad. You just have to get used to it and take care of
yourself."

Poor Control

Conversely, the subjects in poor control expressed several problems in
coping with the diabetes, as noted in the following areas:
Inappropriate/Inaccurate Understanding of their Condition

0 "To me, honestly, they said it was bad, but to me it means good,
because my 1st one was 17.7." (A 17 year old female with
extremely high glycos reported her recent glyco of 15 to be
acceptable as she had had higher (i.e. worse) results in the past.)

"It's okay. I don't have many problems. My control is okay." (An 18 year

old male reported his glycos in good control when his glyco average was

12.5% for 1996.)

93

Missing Insulin Shots
0 "I miss about 2 or 3 shots a month. It's okay because I just take
more insulin the next day because my blood sugar is too high."
0 "Just a couple of weeks ago I skipped a shot. I was doing
something - I think bowling or something."
0 "I wouldn't take them [shots] at night."
Not Worried About Consequences/Diabetic Complications
o "I don't really worry about it. I‘m pretty active and eat pretty well."
The following example was from one adolescent ill extremely poor
control that depicts her painﬁll dilemma at having diabetes during the teen
years.
0 "You just want to be accepted. You don't care about the
consequences at that time."
The qualitative data were drawn from a small subgroup (n=10) of the
overall subjects in this study (n=93). A picture can be drawn of the subgroup
based on their responses with some responses shared by the entire group, and

others limited to those in poor or good control. These are summarized below.

94

It is clear from the interview that these adolescents were, for the most
part, managing their own diabetes. This included adjusting insulin doses
either well or poorly. Despite medical recommendations to the contrary, most
subjects gave themselves supplemental shots of regular insulin, based on their
current blood sugar. Subjects viewed diabetes as making them different from
their peers (especially in that they could not eat the junk food that their
ﬁiends consumed) and felt that diabetes care took too much time from their
schedules. All of the teens had felt compelled to lie about blood sugar
numbers to be able to eat sweets or avoid arguments with parents or doctors.
The subjects generally did not report much of a restriction on their lives
because of the diseases except for wanting to consume sugary foods like their
peers were doing. Mothers were listed as the most important support for
teens.

Those in poor control were the most likely to miss shots of insulin.
Those in the worst control had inaccurate information on their level of control
(which might have been due to a lack of education or from being in denial
about the severity of their condition) and did not worry about their diabetes as
Opposed to those in good or somewhat poor control who worried about
diabetic complications. This lack of concern may support the possibility of

the most potentially serious cases being in denial about their condition.

95

All of the females expressed some level of desire to lose weight, which
is consistent with the existing literature that is presented in this document that
reports that females are more concerned about weight than males. However,
all of the females and one male expressing a desire to lose weight stated that
they would not become involved in disordered eating as it would make
diabetes too difficult to control. This is inconsistent with the previously
reported research that Shows extensive eating disordered behavior and issues
with adolescents with diabetes. It actually suggests that having diabetes, in
some instances, may work to prevent or reduce the chances of a teen with
diabetes developing an eating disorder.

Those teens in good control reported themes of responsibility and a
positive acceptance of their diabetes.

This synopsis Offers a comparison of some of the major issues that
were expressed by the subjects who were interviewed.

Summary

This exploratory research project revealed several interesting features
of this population of adolescents with diabetes through quantitative and
qualitative analysis. First, the subjects were generally ill poor control of their
diabetes. Second, that despite no statistically signiﬁcant differences in

quantitative data, interviews indicated that younger adolescents may have

96

more parental input into insulin management. Third, most subjects were not
managing their insulin appropriately despite being left to mange it by
themselves. This includes feeling compelled to lie about blood sugar results
at some point in time. Themes of responsibility, acceptance Of the disease,
and a positive attitude were demonstrated in word phrases used by those
subjects in good control while some Older adolescents in extremely poor
control had an inadequate understanding Of their level of control or were
perhaps in denial of the lack of control, as presented in the glyco results.
Discussion of the possible ramiﬁcations of these ﬁndings are presented in the

next section.

CHAPTER V
DISCUSSION
Introduction

This section will involve synthesizing the results of this exploratory
research along with the current literature and relevant issues. The material
will be presented beginning with the individual, broadening to the family, and
ending with issues of the social context. Since this exploratory project was
designed to serve as a framework for research on adolescents with diabetes,
possibilities for the direction of future research will be outlined.

Psychosocial Factors

Issues in the lives of adolescents with diabetes highlighted in the
literature were depression, stress, communication styles, conﬂict resolution,
social competence, self-esteem, peer pressure, and eating disorders. These
issues will be addressed in this section.

None of the adolescents in this project expressed depression, nor did
the researcher observe any signs of depression, such as a ﬂat affect. Kovacs
(l 97 9) wrote about depression in adolescents who were newly diagnosed
with diabetes and attributed this depression to the grieving process. Potential
subjects in this study were purposely eliminated if they did not have the

disease longer than one year. The motivation for this selection process was

97

98

not to eliminate those with depression, but to study those who had become
somewhat adjusted to the changes that diabetes brought to their lives. If
Kovacs‘ information is accurate, subjects in this study were consistent in not
presenting with depression as they would likely be past the grieving stage and
depression.

Poor diabetes control is associated in studies with an external locus of
control combined with a low self-esteem (Grossman, 1987), and poor social
interactions and competence combined with stress (Hanson, Henggeler, &
Burghen, 1987). Perhaps those teens with difficulties with social interactions
are deterred from discussing their difﬁculties, obtaining information, and
reviewing other options. This may be reﬂected in this study by those subjects
in poor control who had an inaccurate understanding of the results of their
glycos.

Similarly, the quest for esteem appeared to be an important goal in
those in poor control in that acceptance by peers was expressed in the
qualitative interviews as more important than the consequences of the cost of
not taking care of the diabetes as discussed in the qualitative analysis in
Chapter 4. Although it may be difﬁcult for adults to believe, the threat of
death or severe illness from diabetes complications may not be as important.

to some adolescents in this culture as the threat of not being accepted by their

99

peers. This would ﬁt the picture of an adolescent with a poor self-esteem and
perhaps poor social skills. The literature notes that younger adolescents are
more vulnerable to peer pressure than older adolescents (Bemdt, 1989;
Bixenstine, DeCorte, & Bixenstine, 1976; Collins, & Thomas, 1972).
Younger adolescents (or those less mature) may be more willing to be
involved in deviant behaviors. Our Western culture often involves strong
peer pressure to conform and may include adolescent norms of lying or
stealing (Thomburg, 1982). All of the subjects in the interviews reported that
they had lied about their blood sugar numbers at some time. Diabetes makes
an adolescent different from their peers. The fact that the quantitative data
shows that 62.3% of all of the adolescents in this study were not in control of
their diabetes speaks to the question of the role of acceptance. By
inaccurately reporting low blood sugar numbers, adolescents with diabetes
can engage in a common practice of eating junk food with peers. Parents and
health care providers would be wise to work with the adolescent to either
plan for consuming sugary foods or acceptable alternatives that the teenager
can share with their peers to make them similar instead of different.

A study of adolescents in good control of their diabetes showed that
they demonstrated positive communication skills and an ability to resolve

conﬂicts effectively Wysocki, 1993). This may be a reﬂection of a maturity

100

level that is not always consistent with an adolescent‘s chronological age.
Subjects in this study in good control expressed themes of acceptance and
responsibility in the interviews. Incorporation of the cause and effect
relationship is an important developmental task for the adolescent (lnhelder &
Piaget, 1958; Piaget, 1970, 1972). This mature outlook toward diabetes is
also seen in the compliance of those in good control who reported that they
infrequently or never missed a shot of insulin. Good communications and
conﬂict resolution skills may be a reﬂection of developmental maturity that
appears to be consistent with acceptance of the disease.

The difﬁculties with eating disorders are addressed as a separate
psychosocial issue because of its prevalence in Western society and the
potential for the great impact that it may have on the lives of adolescents with
diabetes. Interviews revealed that half of the subjects in the study felt that
they should lose some weight. This is consistent with studies of adolescents
reporting that they were too fat (Fodor & Thai, 1984; Stuart & Jacobson,
1979). Although interviews involved a small sample size, this report of
overweight may be inﬂuenced by the fact that teenagers with diabetes tend to
weigh more than their peers without diabetes (Pcveler, Fairbum, Boller &
Dunger, 1992; Steel, Lloyd, Young & Maclntyre, 1992; Steel, Young, Lloyd,

& Maclntyre, 1989). A study by Butler and Wing (I995) expressed concern

101

that increased weights in teenagers with diabetes may compel them to
participate in disordered eating. However, all of the subjects denied any
involvement in disordered eating behaviors (i.e. purging and severely
restricting calories). Five of the '10 (two in poor control and three in good
control) explained that they would not engage in these behaviors because it
would make diabetes management too complicated and they risked
hypoglycemic episodes. Since all the subjects openly admitted to lying about
blood sugar numbers, it would seem logical that they would be truthful about
whether they were involved in eating disorders. These responses suggest that
diabetes may actually be an inhibitor to eating disorders as opposed to a
motivator. This interesting ﬁnding obviously needs further extensive
research.

Although the data is not statistically signiﬁcant, it appears that there
may be trends with the most important being that most of the subjects were in
poor control. When vieng poor control (10%-12.9%) versus extremely
poor control (I 3%+) based on subjects single glyco values, females had a
lower percent of subjects in poor control while males had a higher percent in
poor control. When looking at those in extremely poor control, the data is
reversed in that females had a higher percent of subjects in this category

compared with males. Eighteen year old females in this study had

102

a glaring lack of glycos with only six of seven obtaining glyco more than one
glyco and all of these single values were in poor to extremely poor control.
With older females lacking adequate testing and females showing a higher
percentage of single values in extremely poor control, this study indicated a
need to conduct further research to determine if there are gender differences
as well as to investigate reasons for the potential differences.

Aside from information on eating disorders, this study was fairly
consistent with the current literature. Since adolescents generally live in
families and must function within the context of the home environment, the
next section will draw together aspects of this research that relate the
information to the family ﬁmctioning.

Lam]!

Research has shown that poorer diabetic control was found in
adolescents whose parents had high levels of stress and who were
domineering and controlling (Marrero, Lau, Golden, Kershnar, & Myers,
1982; Mengel Lawler, Volk, Viviani, Dees, & David, 1992). Another study
showed that families who are stressed with economic difﬁculties and martial
problems face more psychiatric difﬁculties following a teenager's diagnosis of
diabelm (Kovacs, Feinberg, Paulauskas, Finkelstein, Pollock, & Crouse-

Novak, INS). Conversely, organized families with strong parental support

103

offered a medium for good control of diabetes for adolescents (Hanson,
Henggeler, & Burghen, 1987; Wertlieb, Hauser, & Jacobson, 1988). The
importance of a well functioning family was evident in the literature.

Although one study cited adolescent females with diabetes having a
great deal of conﬂict with their mothers, the qualitative results of this research
indicated that mothers played an important role in diabetes management.
Mother's were listed as the most inﬂuential person for the adolescent by 6 of
the 10 subjects with 2 of the 10 listing their mother and father as equal
supports. (This included a divorced couple in which the father lived at a
different residence.)

Since the adolescent must function within the family context each day,
it is not surprising that the family inﬂuences diabetes control in either a
positive or negative fashion. One of the difﬁculties that faces the adolescents
is that they are frequently working their way to becoming more autonomous.
Diabetes may force a parent to focus on a teenager and fail to let them pass
through stages of independence that would be a normal part of the
developmental process. This may cause conﬂicts that would otherwise be
avoided. This research reveals that all of the subjects in the qualitative
portion had lied at some time about blood sugar tests. This situation may

undermine a parent‘s conﬁdence in their teenager and again force them to

104

place excessive restrictions on the adolescent. There is no easy answer to
this dilemma as diabetes can be a life-threatening condition if not treated
properly. Missing insulin shots and failing to test blood sugars and adjust
insulin can lead to severe health problems or even death. Parents of
adolescents with diabetes may need to interfere in the process of autonomy
by intervening in the life of the teen who is not taking care of their diabetes.
This situation certainly impacts development and provides speculation for
extensive future research.
Community

Finally, the adolescent with diabetes lives and functions within their
community. They must have access to health care for treatment of the
diabetes (Bowman, 1985). Geographic proximity and insurance to cover the
expenses are important considerations in obtaining control of diabetes. The
subjects in this study were generally located within a one hour drive of the
facility so there was no ability to compare them with rural patients.

Quantitative data was gathered on insurance to determine if cost was
prohibitive. Most of the subjects (71%) who attended the MSU Pediatric
Diabetes Clinic had more than adequate insurance coverage which meant that
their families did not pay any money (not even a copay or deductible) for

services. It is expensive to see a subspecialist and cost may be a deterrent to

105

those who do not qualify for Medicaid and do not have insurance. Certainly
information on a more economically deprived area in which subjects had little
to no insurance, would assist in comparisons.
Summm

Individual, family, and community issues all impact the adolescent with
diabetes. Taking into account all of the physical, emotional, psychological,
familial, supportive, conﬂictual, educational, and service aspects is a complex
process. Each component must be broken down and then put back into the
picture to provide a broad understanding.
Future Research

Future research is an essential component in studying the teenager with
diabetes. This section will address general and speciﬁc aspects of the
research and offer some direction for other projects.
General Issues for Future Research

It is noteworthy that all 10 of the interviewed adolescents report
satisfaction with their looks. This may indicate that despite their level of
control, the subjects self-selected because they had a fairly good self-esteem
as it would take some conﬁdence to feel that one‘s answers were worthwhile.
Furthermore, this researcher would caution the reader to avoid inferring

extensively from this information because of the sample size as this is an

106

exploratory study. Future research would ideally involve large samples and
include a random selection of subjects for qualitative purposes.

Perhaps the most interesting information that came from this study is
that the adolescents in this population have an overall difficult time
controlling their diabetes with 62.3% of the subjects having glycos over 10%.
More important, 27.3% have glycos over 13%, which represents extremely
poor control. This has several possible implications, including that the staff
of the MSU Pediatric Diabetes Clinic are not adequately assisting the
adolescents in care; that the adolescents themselves are not attending to their
diabetes on a daily basis; that parents or caregivers are not adequately
monitoring the diabetes; that it is too difﬁcult for most people to control Type
I diabetes with the current technology that is available; or that the social,
emotional and psychological challenges of adolescence make diabetes care
difﬁcult. While this research is exploratory and further research needs to sort
out more of these factors, this author believes that it is a combination of the
factors listed above that interferes with diabetes control. Just as important,
information needs to be researched on effective interventions to improve
control.

This research was focused on adolescents with diabetes The fact that

62.3% of the subjects were not in control of their diabetes is interesting,

107

however, it is difficult to truly understand this percentage without comparing
it with younger children and adults. If one of these groups has a rate of poor
control that is higher, then the subjects in this study may be considered in
better control. Future research should include comparisons across the entire
life span and also include longitudinal information to see if there is a pattern
of increased problems with control of diabetes during the adolescent years.

Another issue is that of compliance. Care must be taken in equating
compliance with control. Subjects may be totally compliant with medical
regimens and yet not be in control of their diabetes. Again, more research is
needed to determine if compliance is directly correlated with control in
adolescents. Subjects' admissions of lying about blood sugar tests makes
speculations about the adolescent's ability to be compliant open to criticism.
Research in this area may include randomly calling subjects across the
country at different times of the day to conﬁrm compliance through most
recent care of diabetes.

Finally, it is possible that the lack of statistically signiﬁcant results is an
artifact of the small sample size. Future research should expand to include
different geographical locations and a larger sample size to increase the

evidence of degree of control.

108

Speciﬁc Issues of Future Research

An area that is notable is that the older females (18 years old) were
generally only obtaining one glyco test per year (six of seven subjects). This
may indicate that there is a problem with this subgroup. Furthermore, all six
subjects had glycos over 10%. The lack of averages to include most of the 18
year old females in the late adolescent group may have inﬂuenced the results
of the statistical testing, particularly since this group had poor single glyco
results. It would be interesting to know why these females only attended the
clinic one time in 1996 since this group failed to respond to a request for
interview subjects. Furthermore, the tendency for females in this study to
have a higher percentage of single value glycos in extremely poor control
combined with the lack of data on 18 year old females indicates a need to
investigate gender and age differences more thoroughly.

Information on eating disorders in this research is not consistent with
the literature for national averages of the general population nor concerns for
increases in eating disorders for adolescents with diabetes because of
tendencies to higher weights. Future research is needed to determine if there
are eating disorder behaviors among teenagers with diabetes. Binging and

purging and severely restricting calories are particularly dangerous to teens

109

with diabetes as they could rapidly become hypoglycemic and go into a coma.
This aspect of diabetes care deserves extensive national research as this
culture idolizes thinness.

Since the subjects in this study were generally bcated close to the
clinic, it would be important for future studies to include adolescents in rural
areas. Perhaps these teens are being treated by a pediatrician or family
practice doctor who may know little about diabetes. A comparison of rural
and urban subjects would be helpful in determining whether control was
inﬂuenced by geographic location as related to receiving health care.

Three important areas that were outside the parameters of this study
were socioeconomic status, intellectual abilities, and family functioning.
These factors are all very relevant to diabetes care. For example, unidentiﬁed
costs may prohibit some families from attending the clinic more regularly and
parents or adolescents who are intellectually challenged may not understand
the instructions for diabetes care. These and many other factors need to be
examined in future research.

Policy, Resegch, ﬂd Clinical Implications

Policy, research and clinical practice implications may be derived from

this project and are highlighted in this section by looking at issues of

technology and methods of direct health and mental health care.

110

This was an exploratory project designed to determine what was taking
place with adolescents who attend the MSU Pediatric Diabetes Clinic. While
no gender or age differences were found to be statistically signiﬁcant, a larger
sample within the United States may reveal differences and therefore a more
extensive research project would be helpful. This could be accomplished by
networking with established pediatric subspecialty clinics throughout the
United States.

It is economically advantageous for national funds to be provided for
diabetes research. Teenagers with diabetes are often seen by subspecialists in
an effort to treat or prevent some of the complications that are potential side-
effects of diabetes, including renal failure (Brink, 1987). This clinical setting
allows researchers access to adolescents with diabetes and the research may
assist in preventing complications that will lead to disablement (such as renal
failure). Adequate health care may allow individuals with diabetes to remain
productive members of society and avoid the federal costs associated with
their health care and support if they become disabled. The societal cost of
their disablement may also be reﬂected in the family's decreased productivity
through such possibilities as one parent giving up employment to take care of

the disabled child (Rosenberg, 1991).

111

Technology in health care is changing rapidly. This research highlights
some areas that the population of adolescents desire for improved diabetes
control. This includes providing a way for them to eat junk food with their
peers and decreasing time attending to diabetes care. Health care dollars for
advances in technology must include consideration for cost effectiveness for
extending life as well as improving quality of life (Muller, 1991). For
example, one teen suggested a blood sugar monitoring device that was like a
watch worn on the wrist that continually monitored blood sugar numbers.
While this would be an ideal method of assisting teens with diabetes, it may
not be ﬁnancially advantageous to pursue this avenue until technology has
improved enough to make it cost effective to have extremely small computers
for this purpose. It would be important to balance health care dollars,
technology, and methods of assisting adolescents with diabetes.

Finally, health and mental health professionals may be assisted through
some of the ﬁndings in this project. One of the most important ﬁndings,
within the quantitative analysis, was that the adolescents in this study were
generally not in good control of their diabetes. Since this is exploratory
research, more data is needed to determine whether the adolescents in the
United States have a similar rate of poor control. Should national averages be

similarly poor, clinicians may need to develop speciﬁc programs designed to

112

address the difﬁculties that adolescents have in diabetes control. This may
include additional education, support, and counseling designed with the
adolescent‘s speciﬁc issues, such as the need for autonomy. This may take
the form of individual, group, and family counseling, regular visits by a social
worker to the home, closer monitoring through intensive clinic appointments,
networking by staff with the teen's school to exchange information and
increased monitoring, and allowmg more freedom for autonomy when the
adolescent achieves better management of their disease.

Social workers on multidisciplinary teams can play crucial roles in
assisting adolescents in poor control. For example, case management
services may assist the patient and family by coordinating services for more
frequent clinic appointments and glyco testing, and monitoring blood sugar
testing and administering of insulin through phone contacts. Services may
also include conducting individual and family counseling, facilitating support
groups, and conveying diabetes education to provide information and clarify
misconceptions for improved care. These types of interventions will need to
be researched to determine whether they are effective in improving the glyco

levels of adolescents who receive the services.

113

Summag

This exploratory research project was designed to offer information
about adolescents with diabetes in the areas of gender, age, health care
expenses, length of time with diabetes, glyco tests, and factors that impact
their lives. The results serve as a basis for future research. Obviously there
is much room for research in studying the adolescent with diabetes. As
technology changes, diabetes care may become more conducive to the
teenage lifestyle, but for now, despite advances in the last few years, the care
of diabetes is complex. It is hoped that this research will lead to more in-
depth studies as well as interventions that are designed to assist adolescents

with diabetes.

APPENDIX A

114

APPENDIX A

Review of Literature Summary

 

 

 

 

 

 

 

 

Research Subtopic Result Date Researchers
Topic
Sociolgy Role Deﬁnes sick role 1951 Parsons
Health Belief Model 1979 Rosenstock &
Kirscht
1988 Kirscht
Depersonalization of individual by 1984 Kallen
medical institutions
Patients taking a more active role in 1978 Marston
health care
Quality of life issues 1989 Freeman &
Levine
Adolescence Task of adolescence is resolution of 1984 Kallen
conﬂict between autonomy &
dependency
Undervaluing adolescence as a 1995 Young,
transitional period Anderson &
Steinbrecher
Teens have mental health needs 1993 Takanishi
Establishing identity 1968 Erikson
Male & female roles 1996 Tischler
Formal Operations; Stages in 1958 lnhelder &
Adolescence Piaget
1970 Piaget
1972 Piaget
Peer pressure 1990 Savin-Willianrs
& Bemdt
Peer pressure more important for 1979 Bemdt
younger adolescents 1976 Bixenstine,
DeCorte, &
Bixenstine
1972 Collins &
Thomas
Older adolescents spend more time 1984 Csikszentmihal
with peers yi & Larson
Issues for adolescents such as body 1986 Blumstein,
image, eating disorders, violence, sex, Cohen, Roth,
drugs, etc. &Visher
1986 Kandel, Davies,
Karus,
&Yamaguchi,
1980 Kandel
1988 Violate, &
Holden
1986 Boskind-White.

 

 

 

 

& White

 

 

115

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Research Subtopic Result Date Researchers
Topic
Sociology cont'd. Adolescence Older adolescents spend more time 1983 Lueas, Beard,
with peers Kranz, &
Issues for adolescents such as body Kurland
image, eating disorders, violence, sex, 1986 Strober
drugs, etc.
Diabetes-discovery Nos. of 11.000 to 12,000 children are 1994 11.8. Dept. of
& treatment children with diagnosed each year with diabetes Health &
diabetes Human Services
Deﬁnition "Quote" p. 3 1994 US Dept. of
Health &
Human Services
Insulin Prior to insulin children died 1993 Clarke, Vance,
prematurely or had jrowth retardation & Rog]
Over 95% of children with IDDM 1996 Orr, Fineberg &
survive into adulthood Gray
Medical Advances Insulin l923-most Western countries have 1993 Bliss
insulin to treat diabetes
Glucose HBGMs shown to be as accurate as 1992 Tate, Clements,
monitors laboratory testing & Walters
Diabetes-diagnosis Conse- Chronic lower levels of hyperglycemia 1994 US. Dept. of
and adjustment quences can result in kidney failure, eye Health &
damage, & premature death Human Services
Confounding Model Organization of research 1977 Bronfenbrenner
Variables
lndividual- Depression due to external locus of 1987 Grossman
Psycho. control
Factors Depression in newly diagnowd 1979 Kovacs
adolescents was a mourning reaction
in their grief process
Good coping skills for minor daily 1986 Hanson &
stress equals better diabetes control in Pichert
adolescents
Good communieation & ability to 1993 Wysocki
resolve conﬂicts positively impacted
ability for good control
High social competence under stress 1987 Hanson,
was not linked with poor metabolic Henggeler &
control, but poor social competence Burghen

 

 

combined with stress was correlated
with poor control

 

 

 

 

116

 

 

 

 

 

 

 

 

Research Subtopic Result Date Researchers
Topic
Confounding Weight 25% of 10,000 students in grades 9-12 1996 Felts
variables cont‘d.. issues & felt they were too fat
eating
disorders
1970 study found that 34.6% of the 1979 Stuart &
females & 14.4% of males felt they Jacobson
were too fat
Male & Female young adults with 1992 Pcveler,
IDDM weighed signiﬁcantly more Fairburrr,
than their nondiabetic peers Boiler, &
Dunger
1992 Steel, Young,
&1989 Lloyd &
Maclntyre
Weight gain of IDDM adolescents may 1995 Butler & Wing
eause the undesirable side effect of
excessive weight loss
From 1960-1980 there were several 1990 Marcus & Wing
reports of adolescents with IDDM who
developed eating disorders
However, there were reports of no 1989 Birk & Spencer
differences in eating disorders between 1985 Hudson,
adolescents with IDDM and control Wentworth, &
groups without IDDM Pope
1986 Rodin, Johnson,
Garfmkel, &
Kenshole
1987 La Greea,
Schwarz &
Satin
1989 Stacin, Link &
Renter
1990 Powers,
Malone,
Coovert &
Schulman
1991 Fairbum,
Pcveler, Davies,
Mann & Mayou
1992 Pcveler,
Fairbum,
Boiler, &
Dunger
1992 Striegel-
Moore,
Nicholson &

 

 

 

 

Tarnborlane

 

 

117

 

 

 

 

 

 

 

 

 

Research Subtopic Result Date Researchers
Topic
Confounding Weight However, there were reports of no 1991 Rodin, Cravel,
variables cont'd. issues & differences in eating disorders between Littiefield,
eating adolescents with iDDM and control Murray &
disorders groups without lDDM Daneman
1986 Rodin, Johnson.
Barfinkel, &
Kenshole
IDDM may accelerate the onset of 1986 Rosmark,
eating disorder in adolescent females Beme,
Holmgren,
Lago, Rengolm
& Sohlberg
1986 Rodin, Johnson,
Garﬁnkel,
Daneman &
Kenshole
Eating disorders in adolescents with 1984 Polivy, Herman,
IDDM may result from a combination Olmsted &
of restricted diets, feelings of Jazwinski
deprivation, weight gains from 1985 Polivy &
excessive insulin Herman
1989 Stacin, Linke &
Reuter
1989 Steel, Young,
Lloyd &
Maclntyre
1990 Marcus & Wing
1990 Steel, Lloyd.
Young &
Maclntyre
1992 Pcveler,
Fairbum, Boiler
& Dunger
Individuals with IDDM may 1995 Butler & Wing
manipulate by misuse of insulin
Women with IDDM often use insulin 1989 Stancin
restrictions for weight control
In a study of 93 women with IDDM 1987 La Greca,
40% reported reducing insulin as a Schwartz &
method of weight control Satin
Family Family especially parents are very 1985 Bowman
important in the eare of diabetes for

 

 

the adolescent

 

 

 

 

118

 

 

 

 

 

 

 

 

Research Subtopic Result Date Researchers
Topic
Family cont'd. Stress increased parental stress resulted in 1992 Mengel,
poorer diabetic control Lawler, Volk,
Viviani, Dees &
Davis
Families from lower socioeconomic 1985 Kovacs,
levels with marital diﬂiculties had a Feinberg,
higher prevalence of psychiatric Paulauskas,
difficulties following the diagan of Findelstein,
diabetes Pollock &
Crouse-Novak
After initial adjustment, adolescents & 1996 Jacobson
families are generally able to cope 1985 Kovacs,
adequately with diabetes eare Finkelstein,
Feinberg,
Krous-Novak,
Paulauskas, &
Pollock,
1986 Kovacs, Brents,
Steinberg,
Paulauskas &
Reid
1987 Jacobson,
Hauser,
Wolfsdorf.
Houlihan,
Milley,
Herskowitz,
Wertlieb &
Watt
Parental Children with IDDM who perceived 1986 Wertlieb,
support & their families as being highly Hauser &
involvement organized demonstrated fewer Jacobson
behavioral problems
Parental support was direme related 1987 Hanson,
with adherence especially with Henggeler &
younger children with IDDM Burghen
Parenting Adolescents with IDDM who perceived 1982 Marrero, Lau,
style & their parents as dominating & Golden,
conﬂict controlling had poorer metabolic Kershnar &
resolution control while those who perceived that Myers

 

 

they had a positive relationship with
both of their parents and that both of
their parents supported their autonomy
demonstrated good control

 

 

 

 

119

 

 

 

 

 

 

 

 

 

Research Subtopic Result Date Researchers
Topic
Family cont'd. Parenting Family cohesion & ability to resolve 1990 Hauser,
style & conﬂict were correlated with good Jacobson,
conﬂict control for adolescents with IDDM Lavori,
resolution Wolsdorf,
Herskowitz,
Milley, Bliss,
Wertlieb &
Stein
Mother & There is a great deal of conﬂict 1985 Bobrow &
daughter between mothers & daughter with AvRuskin
relation- diabetes
ships
Compliance was better in younger girls 1985 Bobrow,
if mothers had taken an active role in AvRuskin, &
the management & treatment of the Siller
disease
Mothers of children with IDDM felt 1989 Hauenstein,
that they were less attached to their Marvin, Snyder
child, perceived themselves as less & Clarke
healthy, and felt that they received less
support from their husbands than did a
control without children that had a
chronic illness
Adolescents who have difficulties with 1989 Bembaum,
coping with IDDM respond well when Albert, &
taught in a group setting how to Brusca
respond to problems resulting from 1988 Padgett,
IDDM Mumford,
Hynes & Carter
1982 Marrero,
Myers, Golden,
West, Kershnar
& Lau
Respon- There is an assumption that adults are 1989 McCormick &
sibility responsible for minor children Brooks-Gunn
Parents & adolescents felt they were 1992 Wysocki,
less able to care for IDDM than did Meingold,
health professionals Abrams,
Barnard,
Clarke,
Bellando,
&Bourgeois
Age alone is not the best indieator of 1989 Follansbee

 

 

when to give the adolescent the
responsibility of self-care

 

 

 

 

120

 

 

 

 

 

 

 

 

 

 

 

Research Subtopic Result Date Researchers
TOJJC
Family cont'd. Respon- 54% of adolescents with IDDM made 1980 Epstein,
sibility errors in their judgment about urine Coburn, Becker
testing Drash &
Siminero
Transferring older adolescents to an 1996 Orr, Fineberg &
adult focused diabetes program does Grey
not appear to negatively impact their
diabetes control
Of 59 young adults who responded to a 1995 Dunning
questionnaire, only 68% tested their
blood at least once a day and 12%
never tested their blood
Frequent daily testing & injections 1988 Diabetes
contributed to better diabetes Control &
management Complications
Trial
Parents should remain involved with 1995 Daneman
their teen's diabetes care
Health Care Access to Access to health care is one of the most 1985 Bowman
medical care important aspects of care
Compliance Insulin resistance occurs during 1986 Amiel,
puberty in normal children & children Sherwin,
with IDDM Sirnonson,
Lauritano &
Tarnborlane
People with chronic illnesses often 1982 Stewart &
don't follow doctor's orders Sullivan
1992 Pcveler,
Fairbum,
Boiler, &
Dunger
1992 Steel, Lloyd,
Young, &
Maclntyre
1990 Steel, Young,
Lloyd, &
Maclntyre
1995 Butler
In a study with 44 pediatric patients 1985 Golden, Herrold
with IDDM, 70% who were in & Orr
recurrent diabetic ketoacidosis were
not taking their insulin & two thirds of
this admitted to not takirgt_heir insulin
Diabetes Complica- Poor control can lead to kidney 1994 Anderson,
cations disease, kidney failure, eye disease & Anderson, &
blindness Gianze
1995 The DCCT

 

 

 

 

Research Group

 

 

121

 

 

 

 

 

Research Subtopic Result Date Researchers
Topic
Diabetes cont'd. Standard for Increased risk with higher glyco 1996 The DCCT
good ranges & Research Group
management 1995
of diabetes 1994 Anderson,
(glycos Anderson, &
below 10%) Glanze
1992 Tate, Clements,
& Waiters
People with diabetes ideally should 1996 The DCCT
have 3 to 4 glycos a year & Research Group
1995
1994 Anderson.
Anderson, &
Glanze
1992 Tate, Clements,
& Walters
Family if long term Someone must care for the person with 1991 Rosenberg
implications neglect leads diabetes often giving up employment
to severe or family must decide to put the person
diabetic in a home
complica-
tions such as
kidney
problems,
blindness,
etc.
Technology Quality of It is believed that advancements of 1991 Muller
life technology (at reasonable cost) ean

 

 

provide the adolescent with diabetes a
more normal life style

 

 

 

 

APPENDIX B

122

APPENDIX B
FLYER FOR MAILINGS

MICHIGAN STATE UNIVERSITY
CHILD HEALTH CARE

 

A110 Clinical Center
E. Lansing, MI 48824-1313
517-353-3241

DIABETES INTERVIEW

The Michigan State University Pediatric Diabetes Clinic is conducting a
research project of teenagers (13 to 18 years of age) who have Type I diabetes.
It is hoped that the information gathered with this research will be signiﬁcant to
assist professionals to improve the care of adolescents with diabetes. We value
your teenager's input into this project.

The research will involve speaking with your child in private for one
interview that lasts 30 to 60 minutes. This will be conducted at a time and place
of your convenience (usually either in your home or at the clinic). Your
teenager will earn $10 for their time in this interview. Interviews will be
conducted in the next two to three weeks. Funding is limited and interviews will
be scheduled on a ﬁrst-come-ﬁrst serve basis. Please telephone immediately for
an appointment.

Interviews are conﬁdential and voluntary and whether or not your teenager
participates in this interview, the extent of his/her participation, or the results of
the answers will not in any way affect medical care, nor be shared individually
with the staff at the Diabetes Clinic, and not involve any cost to you or your
health care insurer.

Please telephone 517-353-7931 to set you an interview appointment. If
no one is available, please be sure to leave a name and phone nrunber on the
answering machine and the researcher will call you back.

Sincerely, Sincerely,
Bruce E. Wilson, MD. Ann Harlan, Researcher
Associate Professor

Director, Pediatric Endocrinology

APPENDIX C

123

Appendix C
FLYER FOR CLINIC

MICHIGAN STATE UNIVERSITY
CHILD HEALTH CARE

 

A110 Clinical Center
E. Lansing, MI 48824-1313
517-353-3241

DIABETES INTERVIEW

The Michigan State University Pediatric Diabetes Clinic is conducting a
research project of teenagers (13 to 18 years of age) who have Type I diabetes.
It is hoped that the information gathered with this research will be signiﬁcant to
assist professionals to improve the care of adolescents with diabetes. We value
your teenager's input into this project.

The research will involve speaking with your child in private for one
interview that lasts 30 to 60 minutes. This will be conducted at a time and place
of your convenience (usually either in your home or at the clinic). Your
teenager will earn $10 for their time in this interview.

Interviews are conﬁdential and voluntary and whether or not your teenager
participates in this interview, the extent of his/her participation, or the results of
the answers will not in any way affect medical care, nor be shared individually
with the staff at the Diabetes Clinic, and not involve any cost to you or your
health care insurer.

Please telephone 517-353-7931 to set up an interview appointment. If no
one is available, please be sure to leave a name and phone number on the
answering machine and the researchers will call you back.

Sincerely, Sincerely,
Bruce E. Wilson, MD. Ann Harlan, Researcher
Associate Professor

Director

APPENDIX D

124

APPENDIX D

PERMISSION AGREEMENT

MICHIGAN STATE UNIVERSITY - CHILD HEALTH CARE

 

A110 Clinical Center
E. Lansing, MI 48824-1313
517-353-3241

PERMISSION FOR DIABETES INTERVIEW

I give permission
(print parent's name)

for my child to be interviewed

(print child's name)
by a researcher who is a PhD. candidate at Michigan State University to assist them in
understanding what is taking place in the lives of adolescents with diabetes.

I understand that these interviews will be conducted with the adolescent in private,
either at the clinic or in my home, and that the results will be combined with other teenagers'
results so that both of our names will be kept anonymous. At my request, the combined results
will be made available to me after the data is analyzed.

The interview will take ﬁ'om 30 to 60 minutes, depending on the extent of my child's
answers.

The interviews will be taped to guarantee that the correct information is analyzed.
However, if either of us does not want the interviews to be taped, we can check the line below
and a recorder will not be used. Results will them be handwritten.

I understand that I may st0p the interview at any time or refuse to answer any
questions.

I understand that these interviews are voluntary and whether or not we participate in
this interview, the extent of our participation, or the results of the answers will not in any way
aﬁ‘ect medical care nor be shared individually with the staﬂ‘ at the Diabetes Clinic.

 

Parent or Guardian’s Signature

 

Teenagers Signature

 

Wrtness's Signature

_ Please do not record the interview

 

Date

APPENDIX E

125

APPENDIX E
INTERVIEW QUESTIONS

MICHIGAN STATE UNIVERSITY
CHILD HEALTH CARE

 

A110 Clinical Center
E. Lansing, Nil 48824-1313
517-353-3241
INTERVIEW QUESTIONS - PAGE 1

INTRODUCTION:

You know more about diabetes than anyone. As the expert, I really want
to know what it is like to have diabetes. 1 will be asking you questions about the
different aspects of diabetes.

DIAGNOSIS:
The ﬁrst section is about being diagnosed with diabetes.

1. How old were you when you were diagnosed with diabetes?

2. Do you remember when you were diagnosed? Tell me about it.

DIABETES CARE:
The second section asks about caring for your diabetes.

3. Who does your blood sugar tests? How often?

4. Who draws up your insulin? How often?

5. Who gives your shots? How often?

6. How often is your insulin adjusted? How does this get adjusted?

7. Do you know the results of your last glycohemoglobin? What does that
number mean?

126

APPENDIX E
INTERVIEW QUESTIONS
PAGE 2

IMPACT OF DIABETES:

10.

11.

12.

13.

The third section asks questions about how diabetes affects your life.
In your experience, what is the most difﬁcult part of having diabetes?

Some teenagers your age have difﬁculty controlling their diabetes. Why
do you believe that this happens?

Some teenagers have trouble keeping up with their diabetes care and may
skip shots or reduce insulin. How about you? How often have you ever
skipped a shot or reduced your insulin?

Is there a time when a teenager might not tell the truth about their blood
sugar numbers or insulin shots? Have you ever been in this position?
What was it like?

How many times have you been hospitalized for diabetes? When did this
happen?

Do you worry about having diabetes? What do you wony about?

OTHER FACTORS THAT MAY INFLUENCE DIABETES:

The fourth section asks about other things that may indirectly impact (or

aﬂect) your diabetes.

14. Some teenagers are more satisﬁed with the way that they look than others.
How satisﬁed are you with how you look?

15. Some teenagers are satisﬁed with their weight and some are not. What
about you? (If not answered in #9)

16. Some teenagers don‘t eat so that they can be thin or eat food and then wish .

that they had not, so they make themselves throw up or take something like a
laxative to make themselves go the bathroom. Do you know any teens who do
this? What about you?

127

APPENDIX E
INTERVIEW QUESTIONS
PAGE 3

17. What types of things can‘t you do because of the diabetes?

18. What types of sports or activities are you involved in at school, in the
community, or at church? How often do you do these things?

SUPPORT SYSTEMS:
The ﬁfth section asks questions about people who might be helpful for you
in cOping with diabetes and problems in life.

19. Who is the most helpful person in your family for you? What do they do
that is helpful?

20. Who is the person in your family with whom you have the most conﬂict or
arguments? What happens when you have problems with them?

21. Is there another adult, that does not live in your home, that you can talk to
about your diabetes? How are they helpﬁIl?

22. Do you have a friend/family member who you can talk to about almost
anything, including your diabetes? Tell me about them.

23. When you have a problem with your diabetes, who do you turn to and how
do they help?

MEDICAL CARE:
The sixth section asks about the medical care that you get for your
diabetes.

24. Do you go anywhere else for diabetes care besides the MSU Clinical
Center? What makes you go there instead of MSU?

25. What is the best part (s) of coming to the MSU Clinical Center, if there is
one?

128

APPENDIX E
INTERVIEW QUESTIONS
PAGE 4

26. What is the worst part (5) of coming to the MSU Clinical Center, if there
is one?

HELPING OTHERS:
The last section asks questions that are designed to help other kids with

27. Some people have strong stereotypes (or beliefs) about what age or gender
of teenagers has more trouble controlling their diabetes. Who do you think has
more trouble controlling their diabetes and why?

28. What do you think would be helpful for other kids your age to know about
diabetes?

29. What would you tell parents or doctors about living with diabetes?
Thank you for your time in this interview. Your answers will be very

helpful to other teenagers. I‘ll combine your answer with those of other teens and
present them in my research.

APPENDIX F

 

GRADUATE
STUDIES

‘33405

ﬂﬂﬁﬁﬂll
FAX: SUM-1171

melamnanUieﬂr
woman—sq
Wuhan

“BOW

   

129

MICHIGAN STATE
U N I v E R s l T Y

March 20. 1997

To: Rena harold
254 Baker Hall

RE: IRE“: 97-177
TITLE: GENDER AND ROE COHPRRISIONS FOR ADOLESCENTS WITH
DIABETES
REVISION REQUESTED: N/R
CATEGORY: 1-C.R
APPROVAL DATE: 03/18/97

The university Committee on Research Involving Human 8ubjects'(UCRIa8)
review of this project is complete. I am pleased to advise that the
rights and welfare of the human subjects appear to be adequately
egotected and methods to obtain interned consent are a ropriate.

erefore. the UCRIHS approved this project and any rev sions listed ,
VI.

IIIIIAL: OCRIHS approval is valid for one calendar year. beginning with
the approval date shown above. Investigators planning to
continue a project be ond one year must use the green renewal
form (enclosed with t e original a roval letter or when a
project is renewed) to seek u te certification. There is a
maXimum of four such expedite renewals ssible. Investigators

wishing to continue a reject beyond tha time need to submit it
again or complete rev ew.

 

RIVIIIOII: UCRIHS must review an changes in grocedures involving human
subjects, rior to in tiation of t e change. If this is done at
the time o renewal, please use the reen renewal form. To
revise an approved protocol at an 0 her time during the year,
send your written request to the IRS Chair. requesting reVised
approval and referencing the project's 123 8 and title. Include
in our request a description of the.change and any revised
ins ruments, consent forms or advertisements that are applicable.

saosants/

cannons: Should,either of the followin arise during the course of the
work. investigators must noti y UCRIHS promptlyz' l) roblems

(unexpected side effects, comp aints. e c.) involv ng uman

subjects or (2) changes in the research environment or new

information indicating greater risk to the human sub ects than
existed when the protocol was previously reviewed an approved.

If we can be of any future help, lease do not hesitate to contact us
at (517)355-2180 or tax (517la 2- 171.

Sincerely.

 
  

vid 8. wright. Ph.D
CRIBS Chair

DEN:bOd

ccc/Khn Harlan

130

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