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PARENTAL SUPPORT AND ADOLESCENT HEALTH
MANAGEMENT OF DIABETES

presented by

Susan Marie Mlynarczyk

has been accepted towards fulfillment
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Doctoral degree in Family and Child Ecology

 

 

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PARENTAL SUPPORT AND ADOLESCENT HEALTH MANAGEMENT
OF DIABETES

By

Susan Marie Mlynarczyk

A DISSERTATION
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of
DOCTOR OF PHILOSOPHY
Department of Family and Child Ecology

2006

ABSTRACT

PARENTAL SUPPORT AND ADOLESCENT HEALTH MANAGEMENT
OF DIABETES

By

Susan Marie Mlynarczyk

The overall purpose of this research study was to investigate the impact of
perceived parental support and different parenting styles upon adherence to
diabetic health management, metabolic control and perceived quality of life for
adolescents diagnosed with Type 1 insulin dependent diabetes. This cross-
sectional quantitative causal comparative study was carried out in a natural
setting. One hundred and two adolescents, between 12 and 18 years of age,
diagnosed with insulin dependent diabetes for at least one year, and attending a
large pediatric endocrinology clinic in West Michigan participated.

The study investigated the relationships between the adolescent’s perceived
level of parental support and the adolescents’ adherence, metabolic control and
quality of life. Additionally, differences in the adolescent’s adherence, metabolic
control and quality of life were examined in terms of the type of parenting style
used. Parenting style was determined by the adolescent’s perception of his/ her
parents in terms of demandingness and responsiveness. Based on these two
dimensions, parents were then classified into one of four parenting style groups:
authoritative, authoritarian, permissive, or neglectful.

Results indicated that perceived parental support was significantly correlated
with adherence and that approximately 17% of the variation in adherence was
explained by perceived parental support. No significant relationship was found

between perceived parental support and metabolic control. Quality of life, as

assessed through the satisfaction with diabetes subscale, showed a significant
relationship with parental support especially after two erroneous outliers were
removed.

Adolescents who perceived their parents to have authoritative parenting
styles had better adherence to their prescribed treatment plan compared to those
who perceived their parents to have authoritarian, permissive or neglectful
parenting styles. Parenting style was able to explain approximately 12% of the
variability in adherence. Additionally, adolescents who perceived their parents
to have authoritative parenting styles had better perceived quality of life than
did adolescents who perceived their parents to have authoritarian or permissive
parenting styles. These findings have implications for health care workers trying
to assist adolescents and their families in the management of their diabetic health

care.

Copyfightby
Susan M. Mlynarczyk

2006

DEDICATION

This study is dedicated to my husband, Jeff Gartner, for his love and many
hours of editorial support. It is also dedicated to my daughters Lindsay, Aubrey
and Chelsea, my mother Sylvia T. Mlynarczyk, and my deceased father Joseph E.
Mlynarczyk. Their love and support have been a constant source of inspiration

and encouragement.

ACKNOWLEDGMENTS

I sincerely extend my appreciation to all those who facilitated my progress
toward completion of this dissertation. I wish to thank Dr. Robert Boger,
chairperson of my dissertation committee, for his dedicated mentorship,
scholarly guidance, encouragement and support. I also wish to thank Dr. Robert
Griffore, Dr. Holly Brophy-Herb, and Dr. Linda Spence, members of my
dissertation committee, for their expertise, constructive contributions, guidance
and support.

My appreciation is also extended to faculty colleges and friends for their
much needed encouragement and support, especially to Tam George for her
emotional support and encouragement, to Nicki Grinstead for her detailed
editing and encouragement, and to Sherry Knoppers for her support and
friendship as we shared many aspects of this journey together. I also wish to
thank Sister JoAn for her incessant prayers and emotional support, my neighbors
Don and Marianne Strazisars for their humor and encouragement, the Kirkhof
College of Nursing for their support, and several dear friends for their
understanding, support, and encouragement.

I would also like to thank Dr. Wood, the staff, and research nurses affiliated
with the Pediatric Endocrinology and Diabetes Clinic for their assistance with
this research project. Grateful acknowledgment is also made for the financial
assistance gained through the Paolucci Scholarship, Marie Dye Dissertation
Completion Fellowship, and the Jean Davis Schlater Dissertation Fellowship.
Lastly, I would like to thank my husband, daughters, mother, brother, and sister-

in-law for their love, understanding and sustaining support.

vi

TABLE OF CONTENTS

ACKNOWLEDGEMENTS ......................................................... vi
LIST OF TABLES ...................................................................... x
LIST OF FIGURES ...................................................................... xi
CHAPTER 1. INTRODUCTION .................................................. 1
Statement of the Problem ...................................................... 2
Significance of the Problem ................................................... 3
Research Objectives ............................................................. 6
Research Questions .............................................................. 7
Research Hypotheses ............................................................. 9
Conceptual and Operational Definitions. . . . . . . . . . . .. ....................... 13
Conceptual Framework ....................................................... 15
Conceptual Map .................................................................. 17
CHAPTER 2. LITERATURE REVIEW ............................................ 19
Theoretical Literature on Social Support ................................... 22
Social Support and Diabetic Management ................................ 26
Family/ Parental Support ........................................................ 26
Regimen Specific Support Behaviors ......................................... 32
Transfer of Diabetes Management Responsibility ......................... 33
Sibling and Peers ............................................................... 33
Developmental Aspects ........................................................ 34
Perceived Support .............................................................. 36
Parenting Styles .................................................................. 37

vii

Quality of Life .....................................................................
Summary ...........................................................................
CHAPTER 3. METHODOLOGY ..................................................
Design ...............................................................................
Research Participants ............................................................
Data Collection Procedures ....................................................
Instrumentation ..................................................................
Perceived Parental Support ..................................................
Parenting Styles ...............................................................
Adherence ......................................................................
Metabolic Control .............................................................
Quality of Life ..................................................................
Data Analysis .....................................................................
Perceived Parental Support ..................................................
Parenting Styles ...............................................................
Summary ...........................................................................
CHAPTER 4. RESULTS ..............................................................
Perceived Parental Support ....................................................
Parenting Style ....................................................................
Adherence .......................................................................
Metabolic Control ..............................................................
Quality of Life ..................................................................
CHAPTER 5. SUMMARY AND DISCUSSION ................................
Perceived Parental Support ....................................................

Adherence .......................................................................

viii

39
41
43
43
43
47
48
49
50
54
55
56
57
57
57
58
59
60
63
64
75
76
83
84

Metabolic Control ..............................................................

Quality of Life ..................................................................

Parenting Style ....................................................................

Adherence .......................................................................

Metabolic Control ..............................................................

Quality of Life ....................................................................

Limitations .........................................................................

Implications for Practice ........................................................

Implications for Future Research .............................................

Conclusion .........................................................................

APPENDICES ..........................................................................

A.

:ormrnonsn

t—i

Parental Support and Adolescent Health Management of
Diabetes Information Sheet ...............................................

HgbAlc Form ..................................................................
Parental Support Questionnaire ..........................................
Parenting Style Inventory — II .............................................
Diabetes Behavior Rating Scale ..........................................
Diabetes Quality of Life -- Youth Scale .................................

Consent Forms ...............................................................

. University Committee on Research Involving Human Subjects

Approval Letter ...............................................................

Spectrum Health Research and Human Rights Committee
Approval Letter ................................................................

REFERENCES .........................................................................

ix

84
86
87
88
89
89
90
90
91
92
93
94

96

98
100
102
107
111
122

127

131

Table 1.
Table 2.
Table 3.
Table 4.

Table 5.

Table 6.
Table 7.
Table 8.

Table 9.

Table 10.
Table 11.
Table 12.
Table 13.
Table 14.

Table 15.

Table 16.

Table 17.
Table 18.

Table 19.

Table 20.

LIST OF TABLES

Description of Categorical Demographic Variables ............
Description of Quantitative Demographic Variables ...........
Family Structure and Education Level .............................
Mean-split Parenting Style Grouping ...............................

Parenting Style Groupings According to Method of
Analysis ....................................................................

K-Means Cluster Groups ..............................................
Spearman rho Correlation Coefficient Values ....................
Description of Quality of Life ........................................
Mean-Split Mean Comparisons ......................................
Mean-Split T—tests .........................................................
TertiIe-Split Mean Comparisons .....................................
Tertile-Split T-tests ......................................................
Descriptions of K-Means Cluster Groups .........................
K-Means Cluster Between Parenting Style Groups t-tests.

K-Means Cluster Between Parenting Style Groups
ANOVA ....................................................................

K-Means Cluster Between Parenting Style Groups Least
Significant Difference ..................................................

HgbAlc Means, Standard Deviations, and Ranges .............
Non-parametric Tests — Mann Whitney ..........................

K-Means Cluster Analyses and Summary of Significant
t—tests, ANOVA’s and Non-parametric Tests .....................

Summary of Null Hypotheses Outcomes ..........................

45

46

46

52

53

54
62
63
67
68
69
70
71
72

73

74

76
78

81

85

LIST OF FIGURES

Figure 1. Conceptual Model for Family and Environment
Transactions ...............................................................

Figure 2. Conceptual Map ..........................................................

xi

16

18

CHAPTER 1

INTRODUCTION

Insulin dependent diabetes mellitus (IDDM) or Type 1 diabetes is a
potentially life threatening illness. It is characterized by high blood glucose levels
resulting from a defect in insulin production that can lead to serious
complications such as retinopathy, nephropathy and neuropathy, or even an
early death. It is considered the diabetes of childhood, with approximately 75%
of diagnosed cases under the age of 18 (Hockenberry, Wilson, Winkelstein, 8r
Kline, 2003). According to the most recent statistics from the National Diabetes
Information Clearinghouse (2005), there are approximately 177,000 children and
adolescents with IDDM in America today. Adolescents, especially those in their
mid and late teens, are particularly at risk for health complications related to
poor diabetic management.

The results from the Diabetes Control and Complications Trial (1993) found
one can significantly delay the onset of complications by consistently lowering
blood glucose levels to near normal. Successful medical treatment of IDDM
depends not only on appropriate prescribed treatment, but also on compliance
with treatment. Effective management is measured by good glycemic control
(near normal blood glucose levels). Self-care management includes multiple
daily blood glucose monitoring tests, insulin injections or use of an insulin
pump, dietary adherence and exercise. It is during the adolescent period that
proper health care management of diabetes falters.

To delay or prevent serious health problems or even death researchers and

health care providers need to discover ways of helping adolescents to better

manage their diabetes. Previous research studies have shown compelling
relationships between parental support and a decrease in adolescent health risk
behaviors. Further research can enhance our understanding of the relationship
between family or parental support and adolescent health and how this might
aid the adolescent in better management of his or her diabetes.

This research investigated the effect of parental support on the adolescents'
management of their diabetes. This first chapter introduces the domain of
inquiry, specifies the problem of the study, describes its significance and presents
an overview of the methodology used including research objectives, research
questions, hypotheses and definitions. The chapter concludes with delineating
the conceptual framework and conceptual map.

Statement of the Problem

This study explored specific dimensions of parental support (perceived
support and parenting styles) that enable the adolescent, 12 to 18 years of age, to
most effectively manage his or her insulin dependent diabetic health care and
promote a sense of quality of life. More specifically, this study explored parental
support as perceived by the adolescent and measured by the Diabetes-specific
Parental Support for Adolescent's Autonomy Scale (Hanna, DiMeglio, 8r
Fortenberry, 2004), and differences in four parenting styles (authoritative,
authoritarian, permissive, and neglectful) as measured by the Parenting Style
Index-II [PSI-II] (Darling 8r Toyokawa, 1997) as they related to the adolescent’s
management of diabetic health care measured through adherence using the
Diabetic Behavior Rating Scale [DBRS] (McNabb, Quinn, Murphy, Thorp, &

Cook, 1994), metabolic control (HgbAlc) and the adolescent’s perceived quality

of life as measured by the Diabetes Quality of Life — Youth scale [DQOLY]
(Ingersoll & Marrero, 1991).
Significance of the Problem

Over the last two decades, researchers have looked increasingly at social
support issues and their impact on adolescent health in terms of diabetic care
management. The adolescent period is a time when good diabetic health
management and the resultant metabolic control falter (Anderson, Auslander,
Jung, Miller, & Santiango, 1990; Anderson, Ho, Brackett, Finkelstein, & Laffel,
1997; Jacobson et a1. 1990; Schafer, McCaul, & Glasgow, 1986). Researchers of
children and adolescents with diabetes have determined that children and
adolescents with poorly managed diabetes care had more dependency conflicts,
anxiety, depression, low self-esteem, social dependency and poor ego
development (Hauser & Pollets, 1979). The majority of studies seem to reflect a
strong relationship between social support, more specifically parental support,
and adolescent health. In a classic study, family support was identified as highly
valuable to adolescents in terms of diabetic health management (La Greca et al.
1995). Weinger, O’ Donnell, & Ritholz (2001) found further evidence to support
this as they explored adolescent views of what types of parental support were
helpful (understanding and reassurance). Tangible forms of support were also
found to be very valuable (Hanna & Guthrie, 2001).

Diabetic health management appears to be positively influenced by positive
parent support. However, the conceptualization of parental support has not been
clearly defined in many cases nor has it been used consistently. Social support is
multidimensional. It can focus on tangible, informational, and emotional types of

support, or it can focus on parental warmth or family cohesion and adaptability.

Some studies have reported variant findings related to the benefits of parental
support. While several researchers have found that having a supportive family
contributes to better adherence and metabolic control (Anderson, Miller,
Auslander, & Santiago, 1981; Hanson, DeGuire, Schinkel, Henggeler, & Burghen,
1992; Jacobson, et al. 1994; Wysocki, 1993) other researchers have found that
adolescents with very supportive families have had unremarkable/ poor
adherence or metabolic control outcomes (Burroughs, Pontious, & Santiago,
1993; Delahanty & Halford, 1993; Kovacs, Goldston, Obrosky, & Iyengar, 1992;
Miller-Johnson et al. 1994; White, 1990). In some cases it has not always been
clear which aspects of support were studied, how support was defined or
whether positive and/ or negative aspects of parental support were considered.
It is possible that the conflicting findings may be due to unclear
conceptualizations, failure to look at various dimensions of support, inadequate
measurement tools or due to examining parent support behaviors in isolation
and failing to examine the parent-child relationship in terms of parenting style.
In a recent review of current literature, Anderson (2004) identified a link between
parenting styles and glycemic control and adherence, noting that families with
more cohesion, support and affection, reflecting an ”authoritative” style of
parenting were related to greater adherence levels and better glycemic control.
Families that were characterized by more conflict, criticism and parental
restrictiveness, an “authoritarian style,” were associated with lower levels of
adherence and poorer glycemic control. A study by Davis, et al. (2001)
confirmed these finding with a population of preschool and elementary school
children 4-10 years of age. This study warrants a closer look to see how parenting

styles and its relationship to health might be applied to adolescents as well.

 

 

 

 

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The construct of parenting style is used to capture normal variations in the
parents’ attempt to control and socialize their children. It reflects a broad pattern
of parenting (Baumrind, 1991). To look only at specific parenting characteristics
or behaviors in isolation may be misleading. As numerous studies have
suggested, positive parent—child relationships are critical to adolescent
development (Bennet & Westera, 1994; La Greca et al.1995). Parenting style has
been shown to impact the parent-child relationship (Baumrind, 1971, 1991;
Glasgow, Dornbusch, Troyer, Steinberg, & Ritter, 1997) and may further the
understanding of the family milieu and its relationship to the care of a
child / adolescent with diabetes. Although, some characteristics attributed to
various parenting styles have been studied (warmth, control), to date, no one has
studied the relationship between ”parenting-style” (exclusively) and adolescent’s
diabetic health care management.

In a recent ”Report on the Task Force on the Family" appointed by the
American Academy of Pediatrics (Anonymous, 2003), it was noted that the
health and well-being of children are ”inextricably linked” to the health, social
circumstances and "child-rearing practices" of the parents. Children need high
quality parenting with unconditional love, warmth and affection, thoughtful and
firm limit setting, and responsive, flexible, respectful, and consistent behavior
patterns. Generally, the task force suggested that the ”authoritative parenting
style” leads to having children who are more likely to be happy, creative, and
cooperative. These children also seem to exhibit higher self-esteem and perform
better academically and socially. It was further recommended that pediatricians
become more proactive in discussing effective parenting practices with their

respective families. Studying the effects of parenting styles on children’s health

and more specifically adolescents with diabetes can only contribute to our
understanding of effective parenting practices that lead to better health for these
populations.
Research Objectives

The overall purpose of this research study was to investigate if perceived
parental support and different parenting styles affect adherence to diabetic
health management, metabolic control and perceived quality of life for
adolescents aged 12 to 18, diagnosed with insulin dependent diabetes. In order to
reach this goal, two specific objectives were developed to guide the research as
follows:

- To investigate the relationship between levels of perceived parental
support and adolescents’ adherence, metabolic control and perceived
quality of life.

° To investigate differences in adherence, metabolic control and perceived
quality of life between adolescents who perceive their parents to have
authoritative parenting styles and adolescents who perceive their parents

to have authoritarian, permissive, or neglectful parenting styles.

Research Questions

In order to accomplish these objectives, the following research questions will

be addressed.

1.

Is there a relationship between adolescents’ perceived level of parental
support and adherence to a prescribed treatment plan?

Is there a relationship between adolescents’ perceived level of parental
support and their metabolic control?

Is there a relationship between adolescents’ perceived level of parental
support and their perceived quality of life?

Is there a difference in adherence between adolescents who perceive their
parents to have authoritative parenting styles and adolescents who
perceive their parents to have authoritarian parenting styles?

Is there a difference in adherence between adolescents who perceive their
parents to have authoritative parenting styles and adolescents who
perceive their parents to have permissive parenting styles?

Is there a difference in adherence between adolescents who perceive their
parents to have authoritative parenting styles and adolescents who
perceive their parents to have neglectful parenting styles?

Is there a difference in metabolic control between adolescents who
perceive their parents to have authoritative parenting styles and
adolescents who perceive their parents to have authoritarian parenting
styles?

Is there a difference in metabolic control between adolescents who

perceive their parents to have authoritative parenting styles and

10.

11.

12.

adolescents who perceive their parents to have permissive parenting
styles?

Is there a difference in metabolic control between adolescents who
perceive their parents to have authoritative parenting styles and
adolescents who perceive their parents to have neglectful parenting
styles?

Is there a difference in perceived quality of life between adolescents who
perceive their parents to have authoritative parenting styles and
adolescents who perceive their parents to have authoritarian parenting
styles?

Is there a difference in perceived quality of life between adolescents who
perceive their parents to have authoritative parenting styles and
adolescents who perceive their parents to have permissive parenting
styles?

Is there a difference in perceived quality of life between adolescents who
perceive their parents to have authoritative parenting styles and
adolescents who perceive their parents to have neglectful parenting

styles?

Research Hypotheses
(Please note: IV stands for independent variable and DV stands for dependant

variable).

Research Question 1 -- IV —Perceived Parental support DV — Adherence

HO 1 There is no relationship between adolescents' perceived level of
parental support and adherence to a prescribed treatment plan.

HA 1 There is a relationship between adolescents’ perceived level of parental

support and adherence to a prescribed treatment plan.

Research Question 2 -- IV —Perceived Parental support DV - Metabolic

M

HO 2 There is no relationship between adolescents’ perceived level of parental
support and their metabolic control values (HgbAlc).

HA 2 There is a relationship between adolescents’ perceived level of parental

support and their metabolic control values (HgbAlc).

Research Question 3 — IV —Perceived Parental support DV — Quality of Life

HO 3 There is no relationship between adolescents’ perceived level of parental
support and their perceived quality of life.

HA 3 There is a relationship between adolescents’ perceived level of parental

support and their perceived quality of life.

Research Questions 4-6 - IV — Pmnting Stvfile DV — Adherence

H04

HA4

HOS

HA5

HO6

HA6

There is no difference in adherence between adolescents who perceive
their parents to have authoritative parenting styles and adolescents who
perceive their parents to have authoritarian parenting styles.
Adolescents who perceive their parents to have authoritative parenting
styles will have better adherence to their prescribed treatment plan than
will adolescents who perceive their parents to have authoritarian
parenting styles.

There is no difference in adherence between adolescents who perceive
their parents to have authoritative parenting styles and adolescents who
perceive their parents to have permissive parenting styles.

Adolescents who perceive their parents to have authoritative parenting
styles will have better adherence to their prescribed treatment plan than
will adolescents who perceive their parents to have permissive
parenting styles.

There is no difference in adherence between adolescents who perceive
their parents to have authoritative parenting styles and adolescents who
perceive their parents to have neglectful parenting styles.

Adolescents who perceive their parents to have authoritative parenting
styles will have better adherence to their prescribed treatment plan than
will adolescents who perceive their parents to have neglectful parenting

styles.

10

Research Questions 7-9 - IV — Parenting Style DV — Metabolic Control

HO7

HA7

HO8

HA8

HO9

HA9

There is no difference in metabolic control (HgbAlc) between
adolescents who perceive their parents to have authoritative parenting
styles and adolescents who perceive their parents to have authoritarian
parenting styles.

Adolescents who perceive their parents to have authoritative parenting
styles will have better metabolic control values (HgbAlc) than will
adolescents who perceive their parents to have authoritarian parenting
styles.

There is no difference in metabolic control (HgbA1c) between
adolescents who perceive their parents to have authoritative parenting
styles and adolescents who perceive their parents to have permissive
parenting styles.

Adolescents who perceive their parents to have authoritative parenting
styles will have better metabolic control (HgbAlc) than will adolescents
who perceive their parents to have permissive parenting styles.

There is no difference in metabolic control (HgbAlc) between
adolescents who perceive their parents to have authoritative parenting
styles and adolescents who perceive their parents to have neglectful
parenting styles.

Adolescents who perceive their parents to have authoritative parenting
styles will have better metabolic control (HgbAlc) than will adolescents

who perceive their parents to have neglectful parenting styles.

11

 

 

5‘:

Research Questions 10-12 - IV - Parenting Style DV - Qualig of Life

HO 10

HA 10

H011

HA 11

HO 12

HA 12

There is no difference in the perceived quality of life between
adolescents who perceive their parents to have authoritative parenting
styles and adolescents who perceive their parents to have authoritarian
parenting styles.

Adolescents who perceive their parents to have authoritative parenting
styles will have better perceived quality of life than will adolescents
who perceive their parents to have authoritarian parenting styles.
There is no difference in the perceived quality of life between
adolescents who perceive their parents to have authoritative parenting
styles and adolescents who perceive their parents to have permissive
parenting styles.

Adolescents who perceive their parents to have authoritative parenting
styles will have better perceived quality of life than will adolescents
who perceive their parents to have permissive parenting styles.

There is no difference in the perceived quality of life between
adolescents who perceive their parents to have authoritative parenting
styles and adolescents who perceive their parents to have neglectful
parenting styles.

Adolescents who perceive their parents to have authoritative parenting
styles will have better perceived quality of life than will adolescents

who perceive their parents to have neglectful parenting styles.

Decision Rule: An alpha of .05 or less (p< .05) will be required to reject the null

hypotheses

12

 

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Conceptual and Operational Definitions

Perceived Parental Support.

Conceptual

Operational

Parenting Style.

Conceptual

Operational

Perceived parental support refers to the adolescent’s perception
of his/ her parent’s support in terms of guidance and non-
directive support of various aspects of the diabetic regimen.
Perceived parental support refers to the adolescent’s perception
of his/ her parent’ 5 support in terms of guidance and non-
directive support of various aspects of the diabetic regimen as
measured by the Diabetes-Specific Parental Support for

Adolescents’ Autonomy Scale (Hanna et al. 2004).

Parenting style refers to the predominant style of parenting used
by parents to parent their adolescents. This includes the
authoritative, authoritarian, permissive, and the neglectful
parenting styles.

Parenting style refers to the adolescent’s perception of parenting
style as measured by the Parenting Style Index —11 [PSI-II]
(Darling & Toyokawa, 1997)), which differentiates between the
authoritative, authoritarian, permissive and neglectful style of

parenting.

13

Adherence

Conceptual

Operational

Metabolic Control

Conceptual

Operational

Quality of Life

Conceptual

Operational

Adherence refers to all of the daily self care activities that the
adolescents (and family) perform to manage their diabetes.
Adherence refers to all the daily self-care activities that the
adolescents (and family) perform to manage their diabetes as
measured by the Diabetic Behavior Rating Scale (DBRS), (Cook,
Aikens, Berry, & McNabb, 2001; McNabb, Quinn, Murphy,

Thorp, & Cook, 1994).

Metabolic control refers to the blood test that allows physicians to
obtain an individual’s average blood glucose level for the
previous three months as a way to assess glucose control.
Metabolic control refers to the average of the adolescent’s last
four glycosylated hemoglobin values (HgbAlc). Lower HgbAlc

values reflect better glucose control over the past three months.

Quality of life refers to the subjective impact of diabetes and its
daily management on the adolescent’s life.

Quality of life refers to the adolescent’s perceived quality of life
as measured by the Diabetes Quality of Life Instrument for Youth

[DQOLY] (Ingersoll & Marrero, 1991).

14

Conceptual Framework

The family ecological model provides the conceptual framework for this
study. This ecological approach allows for the examination of the
interdependence of the family and its interacting environments. In the family
ecosystem, the environed unit is comprised of the family members. The family
ecosystem supports the development of the individual family members through
its roles, rules and interactions. It is this approach that allows one to view the
family system’s members personal attributes such as health and skills, and the
structural attributes of the family such as the authority patterns or styles of
parenting, interpersonal and effectual relationships, and patterns of decision
making (Andrews, Bubolz, & Paolucci, 1980).

This model would allow the interaction between the family members to be
viewed independently or interdependently, such as how the structural attributes
of family members and the personal attributes of family members affect each
other. This model also reflects how the family unit may interact with other
environments such as the health care system. Figure 1 presents a descriptive
model that conceptualizes the family as an ecological unit, comprised of
individuals who interact interdependently and / or independently within their

own system and also with other environments.

15

Environment

Human

Family Unit

Natural

Environment

 

Constructed

  
 
 
 

Environment

\

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Figure 1. Conceptual model for family and environment transactions
(Please note: Images in this dissertation figure are presented in color)

16

Conceptual Map

For this study it was important to identify the behaviors that demonstrate
parental support. To reflect this, a conceptual map was developed to show how
the relationship of parental support and use of the authoritative parenting style
with responsiveness to adolescents’ verbal or non-verbal needs would relate to
an adolescent’s diabetic health management. This is depicted in Figure 2.

The conceptual map reflects the factors identified by Follansbee (1989) as
necessary for an adolescent to assume self-care. When these factors are present
and there is adequate parental support, the adolescent would be able to manage
the diabetes successfully and achieve better metabolic control. If, on the other
hand, the parents were not supportive, lacked the necessary knowledge or skills,
had poor communication about responsibilities, and used non-authoritative
parenting styles, then the outcome would more than likely be poor diabetes
management. Additionally, as the literature supports, the adolescent’ s
perception of parental or family support is also related to good diabetes

management (Burroughs, Harris, Pontious, & Santiago 1997).

17

6 Health Need

Type 1 DM

 

Adolescent

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Legend: Adolescent managed care (.ood metabolic control

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«— Parental support Key points in literature review

Figure 2. Conceptual Map. Proposed model of the significance of parental
support in an adolescent’s management of Type 1 Diabetes Mellitus (DM)
(Please note: Images in this dissertation figure are presented in color)

CHAPTER 2

REVIEW OF THE LITERATURE

Issues affecting Adolescent Management of Type 1 Diabetes

The complex and intensive treatment for Type 1 diabetes can be difficult to
maintain, especially for adolescents who are experiencing significant social,
psychological, emotional, and physiological changes. Successful and cost
effective medical treatment of children depends not only on adequate prescribed
treatment, but also on adolescents’ compliance with treatment. Adolescence has
often been a period during which compliance with prescribed diabetic treatment
plans falter significantly (Anderson et al. 1990; Anderson et al. 1997; Jacobson et
al. 1990; Schafer et al. 1986). Issues affecting diabetic management are
multifaceted, but several factors contributing to adolescent non-compliance are
highlighted below:

1. The developmental demands of adolescence may often conflict with
the diabetic regimen, compelling some adolescents to choose between
them. Adolescents often find the required strict self-discipline and
responsible behavior for self care very burdensome (Anderson et al.
1990). For the adolescent, it is often more desirable to conform with
peer groups and strive for independence from adults, both of which,
may contribute to noncompliance with diabetic management (Jacobson
et al. 1990; La Greca, Follansbee, 8r Skyler, 1990)

2. Family relations have also been shown to affect glycemic control. Some
studies report a positive relationship between family relations and

metabolic control (Anderson et al. 1981; Hanson, DeGuire, et al. 1992;

19

Jacobson et al. 1994; and Wysocki, 1993), and others report a negative
relationship between family relations and metabolic control
(Burroughs et al. 1993; Cedarblad, Helgesson, Larsson, & Ludvigsson,
1982; Delahanty & Halford, 1993; Kovacs et al. 1992; Miller-Johnson, et
al. 1994; Minuchin et al. 1975; White, 1990;). For many adolescents with
chronic illnesses, compliance issues are exacerbated because of
conflicts that often arise in the parent-child relationship (Miller-
Johnson, et al. 1994).

. A study by Overstreet et al. (1995) found that the nontraditional family
structure as compared to the traditional two-parent nuclear family,
was related to significantly poorer metabolic control.

. Issues regarding the transfer of responsibilities to self-care at a time
when adolescents normally are assuming greater autonomy and
independence can further compound the problem. Transferring control
of diabetes management from parent to a young adolescent
prematurely has shown a marked deterioration in the child’s metabolic
control (La Greca et al. 1990).

. Some studies have shown that parent-adolescent communication can
negatively influence metabolic control (Anderson & Coyne, 1993;
Hanna, Juarez, Lenss, & Guthrie, D., 2003). Hanna et a1. (2003) found
that the more adolescents communicated a need for support from
parents, the more they received. However, when there was less
discussion and agreement with parents regarding whose responsibility
it was for certain diabetes management tasks, the adolescent

experienced worse metabolic control.

20

6. In addition, the shift in family and peer relationships, common during
adolescence, can amplify the complexity of the issue. Although the role
of the family is still instrumental in the adolescent’ 5 life, friends begin
to provide much of the adolescent’s emotional and social support
(Jacobson et a1. 1987; La Greca, 1992).

7. A few other researchers found that age seemed to play a role in good
metabolic control. It was found that older adolescents with the
strongest self-concept, the most social support, and the most
knowledge about Type 1 diabetes were more non-compliant than
younger adolescents and had poorer metabolic control (Delahanty 8r
Halford, 1993; White, 1990). It was postulated that perhaps these
adolescents were engaging in power struggles with their parents and
were using compliance as a control issue. These differences can be
explained by developmental age differences and the older adolescents’
(15-18 years old) struggle for independence. Additionally, the role of
hormonal changes and its deteriorating effect on metabolic control my
also be a contributing factor (Arniel, Sherwin, Simonson, Lauritano, &
Tamborlane, 1986).

8. Adolescents with psychiatric disorders (major affective disorders,
conduct or substance use disorders or anxiety disorders) were also
found to have more significant compliance issues (Kovacs et al. 1992).
These finding were consistent with earlier findings that adolescents
with poorly controlled diabetes were found to have more dependency

conflicts, anxiety and depression, as well as poorer psychosocial

21

adjustment (Grey, Tamborlane, & Gene], 1980; Karlsson, Holmes, &
Lang, 1988).

Several issues affecting the adolescents’ management of their diabetes have
been identified. A common thread woven through several of these issues had to
do with parent-child relationships and the kind of support offered by parents.
Previous research studies did not clarify how parental support specifically
related to diabetic health management or predicted which individual may be at
risk for noncompliance and poor metabolic control. Health care providers need
to seek ways to intervene in adolescents’ behavior to enhance their diabetic
management and improve their health. Understanding the importance of social
support and more specifically parental support through the adolescent years,
may guide health care providers in assisting adolescents and their families with
the management of Type 1 diabetes.

This chapter will review the relevant aspects of social support as it relates to
the care and management of Type 1 diabetes for adolescents. Literature from the
disciplines of nursing, psychology, and sociology were examined on the relevant
topics to this domain of inquiry. The review continues with the following topics:
theoretical literature on social support, social support and diabetic management,
parenting style and quality of life.

Theoretical Literature on Social Support

Social support, a construct studied by sociologists, psychologists and health
scientists, serves to identify and explain the nature, significance and outcomes of
social relationships. The study of social support derived from the need to
understand the relationship of social interactions with respect to the health and

well being of the individual. Cohen, Underwood, 8: Gotlieb (2000) identified two

22

 

Pl

be

SO

PSy

processes through which social relationships can influence health. The first type
involves the exchange of emotional, informational or instrumental resources
when there is a perceived need often associated with a stressful experience. In

- other words, social support refers to social transactions that are ”perceived by
the recipient or intended by the provider to facilitate coping in everyday life, and
especially in response to stressful situations” (Pierce, Sarason, & Sarason, 1990, p.
173).

The other process refers to the health benefits that accrue from the sense of
belonging to one or more social groups. This process relates to the belief that
others can influence cognitions, emotions, behaviors and biological responses in
ways that benefit one's health and well—being. This would include influences on
one’s self-concept, feelings of self-worth, sense of control, and conformity to
behavioral norms all of which can impact one’s health (Cohen et al. 2000).

Several theories provided a precedent for the study of social relationships and
its significance on health and well-being. One exchange theorist, R. Weiss,
postulated that some requirements for psychological well-being might only be
met through social relationships (Vaux, 1988). The foundational relationship
between mother and child is said to be the key to the ability to establish all later
social relationships (Ainsworth, 1979; Bronfenbrenner, 1979).

Threescholars, John Cassel, Gerald Caplan, and Sidney Cobb, could be
declared the ”Fathers of Social Support.” They laid much of the ground work for
the meta construct of social support.

John Cassel (1976) was an epidemiologist and physician. He claimed that
psychosocial processes play a role in the etiology of disease and that social

support can have a profound impact in stress—related disorders.

23

He viewed social support as being provided by primary groups, those most
important to an individual, and as serving an important protective function,
buffering or cushioning the individual from the somatic or psychological
consequences of stressful experiences. Thus, social support was prominent in
the health-protective category or psychosocial processes. He advocated the
mobilization of social support as a more feasible direction for intervention

than attempting to reduce exposure to environmental stressors (Vaux, 1988,

p.6).

This last point continues to be an area of focus in the study of social support
today. Gottlieb (1981) summed up Cassel’s legacy as resting on ”the two lines of
ecological inquiry he spurred: a) inquiries devoted to analyzing how people’s
interactions with the social environment conspire to augment their vulnerability
to illness and disease, and b) how social forces can be mobilized in these
situations for the sake of health protection (p. 23).

Gerald Caplan (1974) worked in the area of preventive psychiatry and
community mental health. He also realized the role that social interactions had
on the result of life changes and crises. He adopted several of Cassel’s ideas as
they complimented his own, especially regarding social feedback. He viewed
support systems not only as including family and friends, but also groups and
neighborhood settings that provided informal services. ”With support
strategically placed in each of the settings where an individual spends time, he or
she might be protected almost completely from the adverse effects of stress”
(Vaux, 1988, p.7). He also saw the role that formal caregivers play in the
collaboration with or development of informal support systems.

Sidney Cobb (1976) shared a view similar to Cassel and Caplan regarding the

importance of social support and its relationship to stress and well-being. He

24

 

6)

he

50

im
in(
PR
Prc

irm

more clearly defined social support as ”information” that would lead a person to
believe that he/ she was loved and cared for, valued and belonging to a group
with shared communication and obligation. Cobb further explained that this
”information” served to fulfill needs and to protect from adverse consequences
of crises and stressors (Vaux, 1988). He emphasized that social support was a
stress-buffer. Cobb believed that ”adequate social support can protect people in
crisis from a variety of physical and psychological disorders, presumably
through the facilitation of coping and adaptation” (Vaux, 1988, p. 7).

In his study of social support, Vaux (1988) conceptualized social support to
include: support network resources, support behaviors, and support appraisals.
Support network resources refer to the number of persons that a person turns to for
assistance (family, friends, peers, co-workers and so forth) or comes in contact
with on a daily basis. Support behaviors refer to the behaviors that are generally
recognized as intentional efforts to help a person. These could be emotional such
as listening, offering love, comfort, affection, or advice; or practical, such as
financial or material. Supportive behaviors may not always be considered
helpful. Support appraisals are the subjective evaluative assessment of the
supportive network relationships or supportive acts (Vaux, 1988).

The social support network may influence health status directly through
information sharing or by motivating healthy behavior. Or, it may affect health
indirectly through encouragement to comply with regimes or to maintain health-
promoting behavior such as exercise (Stewart, 1994). Network members may
provide advice and models of behavior or give support provisions that augment

immunity (Bloom, 1990; Cohen 8: Wills, 1985). Zimmerman and Connor (1989)

25

found the most helpful supportive behaviors to be supportiveness, encouraging
maintenance and modeling health change.

In summary, the study of social support is a study on the characteristics of
social relationships that are thought to maintain or promote psychological and
physical health. It seems clear that the field of social support grew out of a desire
and need to understand how social interactions improve or inhibit health and
how to improve health through social interactions.

Social Support and Diabetic Management

In a critical review of the literature on the nature of social support in
adolescents with Type 1 diabetes, Burroughs, Harris, Pontious, and Santiago
(1997) indicated that the support that the adolescent perceives from his or her
family and friends plays a large role in his or her’ 5 overall diabetic management.
They also indicated that family support played a significant role in helping the
adolescent to achieve good metabolic control. The importance of family and
parental support as well as other aspects of social support as it relates to the
adolescent with Type 1 diabetes will be reviewed.

Family/Parental Support

Several studies in the review by Burroughs et al. (1997) looked at family
support characteristics. These included variables such as family cohesiveness,
type of support provided, communication effectiveness, and / or perceived
helpfulness. A study by Anderson et al. (1981) found that adolescents in good
control reported more cohesion and less conflict among family members. These
adolescents’ parents encouraged them to behave independently, express their
feelings directly, and act openly. Adolescents in good control also described

family members as more committed, helpful, and supportive of each other

26

 

(A

ir

“5'1

compared to adolescents in fair or poor control. In contrast, adolescents in poor
control reported that they were treated differently than their siblings, and family
members were critical, distrustful, or indifferent about their diabetes
management.

In attempting to understand the relationships between support and metabolic
control, Hanson, Henggelar, and Burghen (1987c) postulated that parental
support (based on the DFBC which focused on positive and negative responses
of the parent in regard to the subject’s treatment regime) indirectly influences
metabolic control through regimen adherence. They also found that the age of
the adolescent significantly predicted the level of support. As the age of the child
increased the parental support decreased. In this same research, Hansen et al.
(1987c) argued that chronic life stress had a direct link to metabolic control. In
researching this they found that the impact of stress on metabolic control was
buffered by social competence but not by social support. However, it was noted
that social competence is best acquired in a supportive family.

In 1989, Hanson, Henggelar, Harris, Burghen, and Moore, found that good
metabolic control was associated with high marital satisfaction and family
adaptability/ flexibility, and marginally associated with high family cohesion.
These relations were especially strong with a shorter duration of illness. With
longer durations of illness, the associations became weaker.

Burroughs, Pontious, and Santiago (1993) further extended Hanson’s model
by testing the family support components (the degree of positive and negative
interactions) separately for each adherence variable (diet, glucose monitoring,
insulin adjustment, hypoglycemia control, exercise, and foot care). The results

were duplicated that the impact of support variables on metabolic control were

27

dependent upon an association with the adherence variables. In this study they
found, as expected, that adolescents with good metabolic control had parents
who supported their adherence to their treatment regimen with positive
supportive behaviors. In contrast, those adolescents whose parents used nagging
supportive behaviors had poor metabolic control. It was postulated that perhaps
these adolescents did not want to deal with adherence particularly in front of
their peers and were choosing to go along with the crowd and maintain self-
esteem disregarding the negative consequence on their metabolic control. It was
also suggested that some of these youths might be more successful at power
struggles with their parents at the cost of good metabolic control. Additionally,
they found that dietary adherence was most closely associated with metabolic
control. One problem with this study is that parental support was measured with
the DFBC measurement tool, which was not found to be reliable and valid with
adolescents (Schafer et al. 1986).

In a later study by Seiffge-Krenke (1998), adolescents with diabetes and their
parents (as compared to healthy adolescents and families) were found to have a
family climate that was less cohesive but highly structured, organized,
controlling, and achievement oriented. Additionally, family climate such as
cohesion, expressiveness, and low conflict was not related to metabolic control.
This finding was in contrast to the results reported by Hanson et al. (1989) where
good metabolic control was related to high family relations and flexibility,
especially when the illness was of shorter duration.

A study by Hanson, DeGuire, Schinkel, and Kolterman (1995) also found that
adolescents with diabetes described their family climate as less cohesive and less

stimulating than in families with a healthy adolescent. However, they concluded

28

 

st
Ch
mi
in

dla

that positive family relations (high family cohesion and low family conflict) did
relate indirectly to good metabolic control through positive adherence behaviors.
They also noted that higher levels of family-life stress were directly related to
worse metabolic control. Additionally, they found that high levels of stress
related indirectly to poor family relations, which then also related to poor
metabolic control.

In a ten-year longitudinal study, Kovacs et al. (1992) found no relationship
between baseline family support characteristics (open communication, conflict
resolution, family loyalty and satisfaction and close familial relations) and later
regimen adherence. It is possible that the type of family support characteristics
need to reflect the changing developmental needs experienced throughout
adolescence or that the measures were not accurately picking up perceived
support related to conflicts. Jacobson et al. (1994) considered the developmental
aspect and studied changes in family support (cohesion, conflict, expressiveness,
and organization) as measured by the mother’ 5 support through the adolescent
period. They found that adapting family support coupled with low conflict did
protect the adolescent from poor control over the four years post diagnosis.

As the study by Jacobson et al. (1994) would suggest, conflict with parents is
one factor contributing to adolescents achieving poorer metabolic control. The
study by Miller-Johnson et al. (1994) supported this. They found that parent-
child conflict contributed unique variance in predicting both poor adherence and
metabolic control. They postulated that the parent-child conflict that often arises
in the adolescent period may be responsible for some of the difficulties in

diabetic health management.

29

In a different light, Bennett & Westera (1994) found that adolescents generally
identified their families as the most supportive and influential in their lives,
although a significant number of them identified frequent family arguments. In
this particular study, the adolescents were able to explain that arguments with
their parents did not mean they were unhappy or unsatisfied. They still
described a happy home.

Communication was another aspect of family support studied as it related to
adherence and good glycemic control. Studies by Wysocki (1993) and Bobrow,
AvRuskin and Siller (1985) found that adolescents, in families where
communication was commonly open and empathetic with good conflict
resolution skills, demonstrated better adjustment and adherence to the treatment
regimen. Hanna et al. (2003) also studied communication (amount and
agreement with parents) and parental support (related to adolescent seeking and
receiving parental help with diabetic management). They found a significant
difference between adolescents seeking and receiving parental support for
diabetic management where more parental support was received than was asked
for by the adolescent. They also found that when there was less communication
agreement, the adolescent suffered worse metabolic control. Good parent-
adolescent communication was considered a facilitator of parental support to
adolescents with diabetes. However, the more adolescents received support, the
less they were able to engage in their own decision-making. The issue can further
be compounded by unclear patterns of communicating illness-related issues
between parents and adolescents as were found by Anderson and Coyne (1993).

Saucier (1984), found that good self-care management was associated with the

interaction of the child’s age, self-concept, or self-esteem and participation in

30

outside activities. Based on the fact that one’s self-definition (self-esteem) is the
reflection of the appraisals of significant others, Yarcheski, Mahon, and Yarcheski
(1997 ) point out that social support is linked to self-esteem. It also would seem to
follow that good social (parental) support is linked to good self-care
management. Skinner and Hampson (1998) found that family support was a
significant predictor of all self-management measures.

Hanson et al. (1989) found that the longer the patient had diabetes, the
weaker the association between family relations (family cohesion) and good
diabetic control became. Wysocki, Hough, Ward, and Green (1992) found that
early adjustment of IDDM was predictive of later adolescent control. They also
found that good family communication and conflict resolution skills were
associated with better adherence and adjustment to IDDM. Families who were
supportive early on in helping their child to achieve good metabolic control were
less likely to negatively influence the normal developmental process of
adolescence (Maddux, Roberts, Sledden, & Wright, 1986).

Hanson, Henggeler, Rodrigue, Burghen, and Murphy (1988), studied father-
absent families, social support, adherence, and metabolic control. They found
better adherence in the father absent group compared to a group of intact
families but not better metabolic control. Although the social support
characteristics seemed to vary between daughters and sons, it appeared that the
loss of a father may have promoted more responsible and adult-like behavior in
the adolescent.

Many studies on social support and glycemic control involved white middle
class intact families. A few researchers looked at racial differences and found that

although black adolescents had higher blood glucose levels compared to their

31

 

re
be
l€\
PM

me

white counterparts, no relationship was found between the two groups and the
qualitative aspects of social support (Delamater, Albrecht, Postellon 8r Gutai
1991 ; Hanson, Henggeler, 8r Burghen, 1987b). On the other hand, Davis et al.
(2001) found an association between parental restrictiveness and black ethnicity,
lower SES, and worse glycemic control.

Regimen Specific Support Behaviors.

Several studies looked at regimen-specific support behaviors. These
behaviors included, encouraging glucose testing, helping with injections, and
purchasing the proper nutritional foods. Looking at the frequency of these types
of behaviors it was found that parental use of both encouraging and nagging
types of behaviors were predictive of dietary adherence. The study by Schafer,
Glasgow, McCaul, and Dreher (1983) found that criticism and nagging resulted
in worse metabolic control where as no relationship was found between
positive/ encouraging behavior and metabolic control. The study by Burroughs
et al. (1993) found that parents who used negative behaviors to facilitate
adherence tended to have children with poorer metabolic control. However, it
was shown that youths' dietary adherence was positively linked to a father’s
nagging support.

Hanson, DeGuire, et al. (1992) researched the contribution of both the
qualitative family support characteristics (also based on the DFBC with limited
reliability and validity with adolescents) with the more regimen-specific support
behaviors on dietary adherence and psychological adaptation. They found high
levels of regimen support and high levels of family support and flexibility
predicted dietary adherence and general psychological adaptation. None of the

measures predicted metabolic control.

32

 

bl

Transfer of Diabetes Management Responsibility

The transfer of diabetic management responsibility from parent to adolescent
is a necessary process for the adolescent to become a competent self-governing
adult. However, several studies have shown that too early a transfer of diabetic
management can lead to poor metabolic control (Allen, Tennen, McGrade,
Afflect, & Ratzan, 1983; La Greca et al. 1990). It may also adversely affect parent-
child relations and the child's self-concept (Giordano, Petrila, Banion, 8r
Neuenkirchen, 1992). Follansbee ( 1989) found that children’s readiness to assume
self-care responsibility is affected by the following factors: the child’s and
parent’ 5 knowledge of diabetes, the child’s cognitive development and age, the
family environment, and the child’s actual performance of diabetes-related tasks.
Giordano et al. ( 1992) suggest that the transition be gradual with parent’s
continued involvement as the child / adolescent assumes more and more of the
responsibility. Anderson et al. (1990) also found that it is very important that
communication be clear when tasks are transferred.
Siblings and Peers

Considering an ecological perspective one must also recognize the potential
influence of others in the social network such as siblings or peers. Hanson,
Henggelar, et al. (1992) found that although there was a significant association
between sibling conflict and the adolescent’s adaptation to IDDM there was no
significant association between sibling relationships and glycemic control.
Related to conflict, Hanson, Henggelar, et al. (1992) found that adolescents who
had closer, minimally conflicted relationships with siblings seemed to adapt

better to their IDDM and to life in general.

33

As a function of their development, adolescents spend a majority of their time
with peers. Next to parents, peers are the most influential and perhaps
understudied group. La Greca and Skyler (1991) studied the support given from
family and peers and found that although families offered more tangible and
regimen specific support, peers offered emotional support (interpreted as
acceptance). Varni, Babani, Wallander, Roe, and Frasier (1989) reported while
”family social support is predictive of psychological adaptation in children" with
IDDM, only youth’s perception of support from their peers is ”predictive of
psychological adaptation” during adolescence (p. 9). In another study, La Greca
et al. (1995) agreed that both parental and peer support were distinct and both
were considered important to the adolescent.

Ellerton, Stewart, Ritchie, and Hirth (1996) also found that two sources of
support, parents and peers, were particularly important to children and
adolescents with a chronic illness. The subjects expressed a need for peer
friendships. Although children with a chronic condition identified smaller sized
social support networks and less support functions from non-family members
they were overall satisfied with their support systems. It was also noted that
older children were overall less satisfied with their support than were the
younger children.

Developmental Aspects

Several researchers have identified that metabolic control especially seems to
deteriorate in the older adolescent (Delahanty & Halford, 1993; DCCT, 1993;
Grey, Cameron, & Thurber. 1991 ; White, 1990). Considering these findings, it

would seem imperative to examine adolescent development.

34

In a more recent study by Dashiff and Bartolucci (2002) developmental
attributes of the adolescent, more specifically behavioral, cognitive and
emotional autonomy, were examined in relationship to metabolic control. It was
recognized that although the process of autonomy development is not fully
understood, adolescents’ desire for autonomy often exceeded their ability to be
autonomous. Cognitive autonomy referred to the ”reasoning and understanding
of self” in relationship to parent. ”Self-governance, an aspect of cognitive
autonomy is valued highly by adolescents”(p. 97). Behavioral autonomy refers to
self-determined actions such as personal care, management of responsibilities,
and inifiative in activities. Behavioral autonomy is often the basis that parents
use to give greater freedoms. Emotional autonomy refers to the adolescents
separating from parents, by becoming less dependent and by conceptualizing
them more realistically.

Dashiff and Bartolqu (2002) found that only one aspect of emotional
autonomy was significantly associated with poor metabolic control. Daughters
and adolescents in single parent families scored higher on the one aspect of the
emotional autonomy scale that was used to signify a more limited relationship
with the parent/ 5. These adolescents were more likely to perceive their parent/ 3
as being less stable and less consistent. This would suggest that higher emotional
autonomy (in part, based on a perception of the parent/ 5) in early adolescence,
especially in daughters and those in single-parent-homes, may be associated
with poorer self-care management and poorer metabolic control.

Normally it would be expected that each aspect of autonomy would increase
with age, however, no relationship was found in the Dashiff and Bartolucci

(2002) study. This may be attributed to the small age range studied (11-15 years).

35

However, there was a relationship between pubertal age and autonomy. This
finding concurred with earlier studies that parents may grant more freedom
based on more mature physical cues (”looking older"). The concern here is that
excessive behavioral autonomy in the adolescent who may not be cognitively or
emotionally ready may result in poor self-care management and poor decision
making. In summary, it appears that pubertal stage, family structure, perception
of parents and gender may significantly affect the development of autonomy and
ultimately metabolic control in those adolescents with Type1 diabetes.
Perceived Support

In attempting to understand how support relates to promoting health, it is
important to note that supportive behavior is often a function of not only who is
available to be supportive, but also how the support-receivers perceive the
support (support appraisals). There needs to be a match between support given
and how the support received is perceived. This is evidenced in the highly
consistent findings that it is the perception of social support that is most closely
related to health outcomes (Cohen et al, 2000; Grey, Boland, Yu, Sullivan-Bolyai,
& Tamborlane,1998; La Greca et a1, 1995; Rohrle & Sommer, 1994). Hanna &
Guthrie (2001) did a qualitative study on parent’ 5 and adolescent’s perceptions of
the helpful and non-helpful dimensions of support related to the adolescent
assuming diabetic management. They identified that both parents and
adolescents described ”directive guidance” and ”tangible assistance” as both
helpful and nonhelpful. The helpfulness of these dimensions depended on the
degree of directness and the perceived need for help.

Weinger et al. (2001) studied the adolescent’s perception of diabetes-related

parental conflict and support. They found that ”parental worry” which

36

II II

manifested in ”intrusive behaviors, parental blaming” resulting from a ”lack of

understanding,” and differences in ”future” versus ”present” focus between

parent and adolescent were major areas of conflict (p. 334). This study suggests

the need for greater understanding of the conflicts and more dialogue between

parents and adolescents as it relates to diabetic health care management.
Parenting Styles

Supportive parents are seen as warm, firm, close and nurturing. They are
involved in the adolescent’s life by attempting to decrease exposure to risks and
encouraging protective factors. They reinforce positive family values and are
often described as ”authoritative” in their parenting style (Glasgow et al. 1997).

Authoritative parents are seen as loving and democratic. They encourage
adolescent autonomy by expecting and reinforcing appropriate behavior,
maturity, and responsible decision-making. They encourage open
communication and value the rights of both parents and the adolescent
(Baumrind, 1991; Glasgow et al. 1997).

Supportive parents contribute to positive development and maturation of
their adolescent by being both separate from them and still connected to them.
By the nature of their developmental tasks, adolescents need to emancipate
themselves from their parents and form their own identities. Supportive parents
facilitate their adolescent’s emerging autonomy by staying involved, being firm
and loving, and effectively negotiating rules, i.e. reflecting the authoritative
parent (Baumrind, 1991 ; Glasgow et al. 1997).

Baumrind (1971, 1991) identified three styles of parenting after studying
parents interacting with their children. She used the construct of parenting style

to capture normal variations in the parent’ 5 attempt to control and socialize their

37

children. She categorized parent’s interactions with their children using a
typology based on two stylistic dimensions of parenting:

warmth/ responsiveness and control. Baumrind defined ”control” as employing
discipline as well as providing structure, setting limits, and communicating
expectations for competent, age-appropriate behavior (Cowan, Powell, 8: Cowan,
1998).

Baumrind describes parents who are ’warm and responsive’ to their children
and who provide a structure for their learning, set limits when their behavior
threatens to go out of control, and set explicit standards for competent
behavior, as authoritative. Parents who are warm and responsive but exert
little control and make few maturity demands are described as permissive.
Parents who are controlling in a cold, unresponsive way are described

authoritarian (p. 6).

Building on Baumrind’s work, Maccoby & Martin (1983) further clarified that
parenting style captured two important dimensions: parental responsiveness
(warmth and supportiveness) and parental demandingness (behavioral control).
In categorizing parents according to how high or low they were on parental
demandingness and responsiveness, Maccoby & Martin (1983) added a fourth
typology, that of being uninvolved or neglectful. Parents who are low in warmth
and control are considered more ”neglectful” in their style of parenting. Overall,
adolescents whose parents have an authoritative parenting style show higher
levels of competence than children raised by parents using either the permissive
or authoritarian styles (Baumrind, 1991; Dornbush, Ritter, Leiderman, Roberts, &
Fraleigh, 1987).

In a recent article on parental involvement and adolescents with Insulin

Dependant Diabetes Mellitus, Hanna et al. (2003) suggest studying family

38

 

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V(

ab

fact.
2000
diab,
lnlerf

functioning in terms of parenting styles to further delineate communication
issues between parents and adolescents. In addressing family conflict and
diabetes management in youth, Anderson (2004) also studied the link, based on
recent research reviews, of the relationship of different parenting styles to
glycemic control and adherence. She concedes that prior research on diabetes
and general parenting characteristics such as parental warmth and reasonable
demands on child’s behavior (reflective of authoritative parenting) were related
to better adherence and metabolic control. More research is needed in order to
validate these preliminary findings and to learn how to assist parents to better
negotiate their role in diabetes management with their child.

The impact of parenting style has not been studied in terms of how it relates
to a child’s sense of self or quality of life. Parents should be warm and responsive
to their adolescent’s needs, especially health care needs, and provide appropriate
structure and guidance. They need to encourage adolescent autonomy by
expecting and reinforcing appropriate behavior, maturity, and responsible
decision-making. When this occurs through authoritative parenting practices,
youth of all ages may experience more support, less stress, and in turn, feel better
about themselves and their quality of life.

Quality of Life

Quality of life is increasingly becoming more recognized as an important
factor in outcomes assessment of individuals with chronic illness (Delamater,
2000). Hence, it is important to consider quality of life issues in adolescents with
diabetes. Diabetes imposes considerable demands on the adolescent that may
interfere with his or her ability to negotiate important developmental tasks and

achieve good psychosocial adjustment. This is especially true as the expectations

39

placed on the adolescent to follow strict insulin regimens in order to attain and
maintain optimal levels of glycemic control and reduce the risks of health
complications have intensified. By studying the quality of life, one can determine
the impact of a chronic illness such as diabetes on one’s physical, psychological,
and social functioning (Delamater, 2000).

In addition to achieving good metabolic control, it is also an important goal to
ensure that the adolescent develop optimally in all areas of his or her life
including psychological, social, academic, and physical (Delamater, 2000).
Because these areas are greatly influenced by family relationships, researchers
need to include these aspects when studying adolescents with diabetes.

In a review of the literature, Delamater (2000) noted that quality of life, is ”an
important yet understudied issue in adolescents with diabetes. Reviews of
research findings indicate that psychosocial functioning and quality of life may
be adversely affected by diabetes”(p.42). Because of its importance as an
outcome, Delamater stresses that quality of life should be routinely included in
future research.

A study by Grey et al. (1998), found that adolescents with diabetes generally
perceived their quality of life as good with diabetes having a moderate impact on
their quality of life. They also found their families to be ”warm and caring, but
providing less guidance and control than average adolescents.” Against
expectations and in contrast to previous findings family functioning as measured
by adaptability and cohesion, or warmth and caring was not associated with
quality of life. However, the perception of having families that provided more
guidance and control was associated with better metabolic control (Schafer et al.

1986). These findings would suggest that more research is needed to clarify

40

aspects of the parent-adolescent relationship that can impact the adolescent’s
quality of life.
Summary

In summary, adolescents today live in a culture that exposes them to many
health-compromising risks. Family / parental support is crucial for both healthy
and ill children and adolescents. Parents play a significant role in the
development of health behaviors. Several studies have shown the positive
correlations of parental support and healthier outcomes for adolescents (Benson,
1997; Resnick, et al. 1997; Scales & Leffert, 1999).

The same is true for adolescents suffering from a chronic illness such as
diabetes. The majority of studies that focused on family characteristics in which
the parents were warm, caring, involved, and possessing good, open family
communication were more likely to have adolescents who were better adjusted
and had better compliance and in some cases better metabolic control (Anderson,
et al. 1981 ; Hanson et al. 1995; La Greca et al. 1995; Wysocki et al. 1992). It has
also been shown that good parental support has been linked with positive self-
concept, but that in spite of a good self-concept, some adolescents still followed
their diet less closely and therefore had poorer metabolic control (Burroughs et
al. 1993). Research has also shown that communication about responsibility for
regimen tasks, especially during early adolescence when responsibility is being
shifted from parent to child, and ongoing involvement of parents is particularly
critical if good adherence is to be achieved (Anderson et al. 1990). Additionally,
as the diagnosis of Type I diabetes is a stressor for children and adolescents,
research should focus on both physiologic (metabolic) and psychologic

adaptation (Grey & Thurber, 1991).

41

Much can be gleamed from this review of the literature. Several factors
(family environment, cohesion, self-concept, supportive parents, low conflict,
regimen-specific support behaviors, communication patterns, dietary adherence,
ongoing parent involvement, life-stressors, and coping patterns) have been
associated with glycemic control, positively and negatively. The process of
achieving good glycemic control is complex and it becomes inherent to look at
the interrelatedness of the above components in addition to exploring new
factors when looking at social support and its impact on diabetic health
management.

The 1993 landmark study by the DCCT demonstrated that achieving good
glycemic control could deter the common complications associated with IDDM
for many years. In order to help adolescents with Type 1 diabetes achieve good
metabolic control and stave off complications, health care providers need to be
aware of these factors as they research, guide, educate, and collaborate with

these families.

42

CHAPTER 3

METHODOLOGY

This chapter will describe the methods used to carry out the study. First the
design will be discussed, followed by description of the research participants,
instrumentation, procedures used, and data analysis.

Design

This cross-sectional quantitative study explored the nature of support that
enables adolescents to most effectively manage their diabetic care. This causal
comparative study was carried out in a natural setting. The unit of analysis was
the adolescent between 12 and 18 years of age. Adolescents were targeted if they
were in the designated age range, had been diagnosed with insulin dependent
diabetes for at least one year, met the criteria, and attended a large pediatric
endocrinology clinic in West Michigan.

Research Participants

The subjects of this study were adolescents between the ages of 12 and 18
years, diagnosed with IDDM/ Type 1 diabetes who saw any one of the pediatric
endocrinologists at the designated clinic. Criteria for inclusion in the study
included 1) age 12 through 18 years, 2) living with a parent, 3) ability to speak or
read English, 4) living with a diagnosis of diabetes for at least one year, 5) having
, a diabetes regimen that included insulin injections or the use of an insulin pump,
glucose monitoring, meal planning and exercise, and 6) not having a diagnosis of
any mental health issues. The first 123 adolescents meeting the criteria were
asked to participate in the study. Permission to conduct this study was granted

from Michigan State University Human Subject Review Committee, the Human

43

 

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ado
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diag

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Subjects Review Committee for the associated health care institution and the
Administrative Office of the clinic involved.

One hundred two adolescents (ages: 12 to 18 years) with Type 1 diabetes
participated in the study. Of the 123 subjects approached, eight declined or
changed their minds stating time issues, eight were found ineligible (after closer
scrutiny), one withdrew after an unexpected death in the immediate family and
four failed to return the questionnaires. The participating adolescents had been
diagnosed with Type 1 diabetes longer than one year, had no significant mental
health issues, lived with at least one parent and were on a treatment regimen that
included insulin via injections or the use of an insulin pump.

The adolescents were asked to provide information on their background and
current family situation. These variables included age, sex, ethnic identification
(African-American, Asian-American, Hispanic-American, Caucasian and other),
family structure (two natural parents, single parent, stepfamily, other), and the
amount of education completed by each parent residing in the home (coded as
less than college completion or college completion and higher). These variables
were included as the scores on parenting practices and the dependent variables
may vary according to the adolescent’s age, sex, ethnicity, parental education
and family structure (Lamborn et. al., 1991).

There was a fairly equal number of males and females (Table 1). The majority
of the participants were Caucasian. The category of ”other” was marked when an
adolescent was a blend of two or more ethnic groups. Ages ranged from 12 to 18
years with age 15 as the mean and median (see Table 2). Average age at
diagnosis was 7.69 years. Adolescents reported missing an average of 3.3 days of

school in the last year as a result of their diabetes.

44

 

 

Et

I/

 

Description of Categorical Demographic Variables (N=102)

 

 

 

 

Variable n %
Gender Male 52 51
Female 50 49
Grade 6 4 3.9
7 1 1 10.8
8 13 12.7
9 16 15.7
10 22 21.6
11 17 16.7
12 16 15.7
1 yr. college 1.0
Missing 2 2.0
Ethnicity Caucasian 91 89.2
Black/ African American 3 2.9
Hispanic 2 2.0
Asian American 1 1.0
Other 5 4.9

 

45

Table 2
Description of Quantitative Demographic Variables (N2102)

 

 

Variable Median Mean SD Range
Age 15 15 1.67 12 - 18
Age at diagnosis (yrs) 8 7.69 3.55 1 - 15

 

 

Table 3

Family Structure and Education Levels

 

 

Variable n %
Family Structure
Two natural parents 70 68.6
Single/ divorced parent 14 13.7
Step-family 9 8.8
Other 9 8.8

 

Father’ 5 Education Completed

High-school or less 52 51.0
College of more 45 44.1
Missing 5 4.9

 

Mother’s Education Completed
High-school or less 48 47.1
College or more 54 54.9

 

46

Regarding family structure, the majority of adolescents lived with two
natural parents (Table 3). A small percentage of adolescents marked ”other” for
family structure. This ”other” category seemed to reflect adolescents who had
two involved natural parents who were divorced and also had step families.
Educational levels between mothers and fathers appeared comparable except
slightly more mothers completed college or more.

Data Collection Procedures

The staff research nurse at the pediatric endocrinology clinic helped
determine the eligibility of the adolescents meeting the criteria. Once eligibility
was established the research nurses approached the first 123 adolescents and
their families when they arrived for their scheduled endocrinologist visit. First,
the parents and adolescent were asked for their willingness to participate. The
adolescents and parents who expressed interest and a willingness to be involved
were asked to sign an informed consent and assent form detailing the nature of
the study, an approximate length of time required to complete the four surveys,
and contact information for the investigator. Copies of the consent/ assent form
were provided for participants to take home, in accordance with the guidelines
of the Michigan State Committee for the Protection of Human Subjects.

For the purpose of anonymity the recruiting research nurse documented the
name of the participating adolescent on a form identifying them with an
identification (ID) number. While waiting, the adolescents were given the
surveys and return envelopes only marked by this ID number. The nurse or
physician then documented the patient’s last four HgbA1c values on a
corresponding sheet with the patient’s initials and ID number. When the four

surveys were completed at the clinic the adolescent was instructed to put them in

47

a sealed envelope and return them to the specified collection box. No one in the
office was able to see the responses of the adolescent. For the majority of
adolescents who needed to complete their surveys at home, a pre-addressed
stamped envelope was provided. Several adolescents did receive phone calls or
mailings reminding them to return their completed surveys. Each participant
was mailed $10 upon the receipt of their completed questionnaires and was
included in the drawing for four $50 gift certificates (awarded at the completion
of data collection) as an incentive to encourage adolescents to submit completed
questionnaires.

Instrumentation

In addition to the demographic variables, the variables of interest for this
study included the two independent variables-parenting styles and perceived
parental support--and the three outcome or dependent variables. The dependent
variables included the HgbA1c laboratory values indicating glycemic control,
adherence to treatment plan measures, and measures reflecting the adolescents’
perceived quality of life.

The following questionnaires were chosen to specifically obtain the
adolescent’ s perspective. This is justified on several grounds. First, parental and
adolescent reports of adherence behaviors have been highly correlated (Miller-
Johnson et al. 1994). Secondly, how adolescents interpret their home
environment is crucial to understanding how they react or respond to it (Cohen
et al. 2000; Glasgow et al. 1997; Pierce et al. 1996). Additionally, in terms of
parenting, Bronfenbrenner (1979) has argued that youths’ perceptions of their
parent’ 5 behavior may be as important as the parent’s actual parenting practices.

It has also been reported that parents often overstate their supportive behaviors

48

and that adolescents often report less supportive behaviors than do their parents.
Also the perspectives between mother and father differ in terms of portraying
the family climate (Seiffge—Krenke, 1998).
Perceived Parental Support

Perceived parental support was assessed using the Diabetes-Specific Parental
Support for Adolescents’ Autonomy Scale (Hanna et al. 2004). This scale was
specifically developed to facilitate research on parental support for adolescent’s
development of diabetes management autonomy. The scale consists of items
identifying frequency of enacted support and perceived helpfulness. It also
measured support dimensions of guidance (behaviors to improve performance)
and nondirective support (behaviors expressing caring). The initial scale started
with 40 items and after content validity indexes, item analyses, and factor
analyses, several items were deleted, leaving a total of four items. These items
were scored using a 5-point Likert-scale eliciting perception of parental enacted
support (0=none of the time to 4=all of the time) and perceived helpfulness
(0=not at all to 4=very helpful). The scale provided a sum of responses for the
frequency of enacted support and a sum of responses for perceived helpfulness
of support. As suggested by the author, the perceived parental support score
reflected the combination of support scores obtained from the frequency
responses of enacted support multiplied by the perceived helpfulness responses
of support (N. Darling, personal communication, March, 16, 2006). Only one
subject left two items blank and these values were imputed based on the mean of
other scores provided for that section. According to Hanna et al. (2004), the
instrument’ 5 internal consistency reliability coefficients ranged from 0.77 to 0.80.

Construct validity was supported by the relation of this scale with other

49

measures of parental support such as the Support Subscale of the DFBC (Schafer
et al. 1986) and Guidance/ Control and Total Scale of the DFBC (Hanna et al.
2004; McKelvey et al. 1993).

Parenting Styles

Parenting style has most often been identified by characterizing the parenting
environment along two continuous dimensions: demandingness and
responsiveness. These dimensions were based on the previous research of
Baumrind (1971, 1991) and Maccoby & Martin (1983). One problem noted with
earlier parenting style instruments was that they did not distinguish between
parenting style and parenting practices. Parenting style refers to the ”overall
emotional climate in which particular parent-child interactions occur;” whereas
parenting practices are ”directed towards particular goals” such as ”encouraging
academic achievement” (Darling & Toyokawa, 1997, p. 2). The PSI-I was
developed to evaluate parenting style independent of parenting practice as
described by Darling and Steinberg (1993).

The PSI-I had been further revised to improve internal consistency and
variability of items, and to decrease bias. Additionally, to better assess
dimensions of parenting style, Darling added a third subscale of psychological
autonomy-granting. Psychological autonomy-granting relates to the level of
behavioral as well as psychological control attempts of the parent(s) over the
adolescent (Darling, n. d.). The revised version is called the PSI-II (Darling 8r
Toyokawa, 1997).

In this study, parenting styles were measured using the Parenting Style
Index—II [PSI-II] (Darling & Toyokawa, 1997). The PSI-II consists of the three

subscales (responsiveness, autonomy-granting, and demandingness) with five

50

items each. According to Darling and Toyokawa, each subscale showed
acceptable alpha levels (responsiveness - .74, autonomy-granting - .75, and
demandingness -.72). Inter—correlations were also reported (Responsiveness:
Demandingness - R=34; Responsiveness: Autonomy-Granting - R=.46; and
Demandingness: Autonomy-Granting — R: -.11). Although there may be some
concern regarding the interrelationships between responsiveness and
demandingness, or responsiveness and autonomy-granting, this is consistent
with the interrelationships found in other studies and may reflect the
adolescents’ perception of a link between parental rule setting and emotional
attachment (Darling & Toyokawa, 1997). Validity was also measured using
correlation coefficients to show the relationship between positive parenting and
adolescent outcomes, parenting practices and perceived authority. These values
were in the expected magnitude and direction (Darling & Toyokawa, 1997).

As suggested by the author (N. Darling, personal communication, March, 16,
2006) and consistent with the literature (Darling & Toyokawa, 1997; Maccoby 8:
Martin, 1983) two of the three subscales (responsiveness and demandingness)
were used to categorize parenting into four styles of parenting (authoritative,
authoritarian, permissive and neglectful). There were no missing values except
for responses on fathers when the father was not involved in the adolescents life
(11 = 7). The measures for two parent households were averaged. According to
Baumrind (1991), there is significant convergence between the adolescents’
perceived mothers’ and fathers’ ratings. The data in this study supported this as
well.

For thoroughness, parenting style was analyzed three different ways as

suggested in the literature or in a personal communication with the author. First,

51

 

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19‘.
0n
let}
in tl‘.

Par 01

four parenting styles or categories were defined by using a mean-split procedure
(N. Darling, personal communication, March, 16, 2006; Weis & Schwartz, 1996).
Scores on the demandingness and responsiveness subscales were used to assign
parents to one of four parenting style groups. Once the mean was obtained
(mean = 19), parents were placed into one of the parenting style groups based on
whether they were above or below the mean (see Table 4). With this technique
there was a fairly equal distribution of subjects across each of the four parenting

styles. No subjects were excluded.

 

 

Table 4
Mean-Split Parenting Style Grouping (N=102)

 

 

Variables Demandingness
Above the mean Below the mean
Responsiveness
Above the mean Authoritative (n=23) Permissive (n=25)
Below the mean Authoritarian (n=27) Neglectful (n= 27)

 

Secondly, the method of trichotomizing the sample was used in order to
ensure distinct categories of parenting styles (Lambom et al. 1991 ; Steinberg et al.
1994). In this method, the responses on each of the subscales were trichotomized.
Only subjects falling in the upper or lower tertiles were used in the analyses. This
technique caused the exclusion of several subjects. Authoritative parents scored
in the upper tertiles for both demandingness and responsiveness; authoritarian

parents scored in the top tertile for demandingness, but the bottom tertile for

52

responsiveness; permissive parents were high on responsiveness but low in
demandingness; and the neglectful parents were low in both demandingness and
responsiveness. Table 5 reflects the distribution of subjects according to each

method.

 

Table 5
Parenting Style Groupings According to Method of Analysis

 

 

Variables Mean-Split Tertile-Split K-means Cluster
Authoritative

n 23 17 37

% 22.5 16.7 36
Authoritarian

n 27 10 16

% 26.5 9.8 16
Permissive

n 25 9 45

% 24,5 8.8 44
Neglectful

n 27 18 4

% 26.5 17.6 4
Total N 102 54 102

 

The third method of analyzing parenting style involved the K-means cluster
analysis. With this method the ideal parent types were entered to see where the
study parents fell. Based on the responsiveness and demandingness scores,
parenting styles were grouped to display small within-cluster variations, and
large between-cluster variations (Kachigan, 1991). Again, parenting styles which

reflected high demandingness and high responsiveness scores were used to

53

create the authoritative group, parenting styles which reflected low
responsiveness but high demandingness were used to create the authoritarian
group, parenting styles which reflected high responsiveness but low
demandingness were used to create the permissive group, and parenting styles
which reflected low responsiveness and low demandingness were used to create
the neglectful group. Table 6 presents the responsiveness and demandingness
means and standard deviations that were used to create each of the four

parenting cluster groups.

   

 

 

"ab. ‘

K-Means Cluster Groups

Variables n Responsiveness Demandingness
Mean SD Mean SD

Authoritative 37 21.99 1.99 21.18 1.83

Authoritarian 16 14.91 3.07 21.59 1.17

Permissive 45 18.63 1.68 17.30 1.72

Neglectful 4 12.75 3.01 14.88 3.33

   

Adherence

Adherence was measured using the Diabetic Behavior Rating Scale (DBRS),
(Cook et al. 2001; McNabb et al. 1994). The DBRS, a more recent version of the
Children’s Diabetic Inventory, roughly assesses the degree of responsibility
assumed by the adolescent related to 39 diabetes self-management behaviors and

the frequency with which these are performed. These behaviors include daily

54

prevention activities, activities related to modification of the diabetes care plan,
intervention behaviors such as those related to illness, and activities to maintain
diabetic care supplies. Additionally, these behaviors assess the four areas of
adherence: diet, exercise, glucose testing, and insulin administration that are
considered important by the American Diabetes Association. Both responsibility
behaviors and their frequency are rated on a 5-point scale (5=adolescent totally
responsible to 1=parent totally responsible; and 5=always to 1=never).
Cronbach’s alpha was reported to be 0.86 for the behavioral frequency items and
0.94 for the degree of responsibility items (McNabb et al. 1994). Content validity
was earlier assessed by a panel of experts. Construct validity was supported
from the findings of children’s overall level of diabetes self-care responsibility
behaviors significantly correlating with age (McNabb et al. 1994). In this current
study, as suggested by one of the authors, adherence was based on the sum of
frequencies in which adherence behaviors were performed (S. Cook, personal
communication, January, 19, 2006). Missing values were imputed based on mean
scores from items in the same section.
Metabolic Control

Metabolic control is routinely measured during clinic visits by obtaining a
blood sample and measuring the adolescent’ s hemoglobin A1c (HgbA1c). It is a
value that reflects the level of serum glucose over the preceding six to eight
weeks as the glucose molecule attaches itself to the red blood cell for the life of
the red blood cell. It is considered the best indicator of control during the
preceding two to three months. To control for skewed values that may occur
during the honeymoon phase (defined as the period in which doses of insulin are

< 0.5 units/ kg/ day, post diagnosis), metabolic control was determined based on

55

 

S.
88
SC:
Stu
Ca it
On I

the I

the average of the last four HgbAlcs over the last year or since the adolescent
came out of the honeymoon phase. The patient’ 5 last four documented values
were recorded from the adolescent’s medical record by the nurse or physician.
These values were then averaged by the investigator to determine the average
HgbA1c. The American Diabetes Association (2006) recommends the goal for
HgbA1c values to be in the range of 6% - 7%.
Quality of Life

Quality of life was measured by the Diabetes Quality of Life for Youth
[DQOLY] (Ingersoll & Marrero, 1991). This instrument is an adaptation of the
Diabetes Quality of Life measure that was developed specifically to assess the
psychosocial impact of the intense diabetic treatment regimens for participants in
the DCCT. Items of little relevance to adolescents and children were omitted or
modified. A panel of pediatric diabetic experts verified the content validity of the
resulting items. The revised instrument with a 5-point Likert-scale contains 3
subscales. The first is a 26-item Diabetes Impact Scale that rates the impact of
diabetes on life from 1 (no impact) to 5 (always affected). The second is a 13-item
Disease-Related Worries Scale that rates worries related to diabetes from 1 (never
worried) to 5 (always worried). The third is a 17-item Diabetes Life Satisfaction
Scale that rates satisfaction with diabetes from 1(very satisfied) to 5 (never
satisfied). Following the three subscales, the authors included a general rating
scale of overall health (utilizing a 4-point scale, 1=poor to 4=excellent). In this
study, quality of life was analyzed using the summation of each of these sub
categories (impact, worry and satisfaction). Missing values were imputed based
on mean scores from items in the same sub category. Cronbach’s alpha scores of

the Diabetes Impact Scale, the Disease-Related Worries Scale, and the Diabetic

56

Life Satisfaction Scale were reported to be 0.83, 0.82, and 0.85 respectively
(Ingersoll & Marrero, 1991).
Data Analysis

Data analyses began with descriptive statistics to summarize the data. Since
most of the data was ordinal in nature, the mean, standard deviation, and range
were appropriate. Cross-tabulations assisted with organizing the data and
provided a beginning look at the relationships among the variables.
Perceived Parental Support

To first investigate the relationships between the adolescent’ s perceived level
of parental support and the dependent variables (adherence, metabolic control
and quality of life) correlational analyses were conducted. Multiple regression
analyses were then performed to evaluate the associations between the
independent variable (perceived parental support) and the dependent variables
(adherence, metabolic control and quality of life).
Parenting Styles

Since the data related to parenting styles was categorical, t-tests analyses and
analyses of variance (ANOVA’s) were performed to evaluate the differences
between parenting style groups on the dependent variables (adherence,
metabolic control, and quality of life). To determine if assumptions for statistical
tests were met, Levene’s Tests for Equality of Variances were run and when
appropriate, non-parametric analyses were also completed. Multiple regression
analyses were also performed to evaluate the associations between the
independent variable (parenting style) and the dependent variables (adherence,

metabolic control, and quality of life).

57

Summary
This chapter has explained the methods used in this quantitative analysis to
study the relationships and differences between parental support, parenting
styles and how the adolescent manages his or her diabetic health care. The next

chapter will present the results of this quantitative analysis using these methods.

58

CHAPTER 4

RESULTS

The overall purpose of this study was to investigate the relationships of
perceived parental support and differing parenting styles to adherence to
diabetic health management, metabolic control and perceived quality of life for
adolescents aged 12 to 18, diagnosed with insulin dependent diabetes. The
chapter is organized by addressing each of the 12 research questions and the
relevant null hypotheses.

Correlations were calculated to look for relationships between the two
independent variables, perceived parental support and parenting style, and
between the three subcategories of the parenting style inventory: responsiveness,
demandingness, and autonomy-granting. A significant relationship was found
between perceived parental support and two of the parenting style subscales;
autonomy-granting subscale (r = .267, p < 0.01), and responsiveness subscale (r =
.433, p = .000). (Note: analyses are reported as 2 tailed). Parental support was
only mildly correlated with demandingness (r = .188, p = .058), although not
significantly. A significant relationship was also noted between the
responsiveness subscale and the autonomy-granting subscale of the parenting
style inventory (r = .587, p < 0.01). The latter is consistent with what the
researchers found in the development of the PSI-II (Darling & Toyokawa, 1997).
The autonomy-granting subscale was not used in this analysis.

Correlations were also calculated between adherence and metabolic control
(HgbA1c). In this sample, adherence and metabolic control were not significantly

correlated (r = .099, p = .322).

59

Perceived Parental Support

The first three research questions are related to the research objective to
investigate the relationship between levels of perceived parental support and
adolescents’ adherence measures, metabolic control and perceived quality of life.
The first research question addressed perceived parental support and
adolescents’ adherence measures. Is there a relationship between adolescents’
perceived level of parental support and adherence to a prescribed treatment
plan? The second and third research questions are similar but are investigating
the relationships between perceived parental support and metabolic control and
perceived quality of life respectively. These questions are answered by testing
the following null hypotheses:

HO 1 There is no relationship between adolescents’ perceived level of
parental support and adherence to a prescribed treatment plan.

HO 2 There is no relationship between adolescents’ perceived level of
parental support and their metabolic control.

HO 3 There is no relationship between adolescents’ perceived level of
parental support and their perceived quality of life.

Spearman’s rho correlation coefficients were calculated to determine
relationships for each of the null hypotheses (Table 7 ). A significant relationship
was found between the adolescent’ s perceived level of parental support and
adherence to a prescribed treatment plan (r2 = .3.75, p = .000). Null hypothesis
HO 1 was therefore rejected and research question 1 was answered affirmatively;
”There is a relationship between adolescents’ perceived level of parental support

and adherence to a prescribed treatment plan.” As the perceived level of parental

60

support increased so did the adolescent's adherence to a prescribed treatment
plan.

N 0 significant relationship was found between perceived parental support
and metabolic control (r2 = -.146, p = .144). However, a negative trend in the
relationship was noted. Consequently, null hypothesis HO 2 was accepted and
research question 2 was answered negatively; ”There is no relationship between
adolescents’ perceived level of parental support and their metabolic control.”

The third research question, ”Is there a relationship between adolescents’
perceived level of parental support and their perceived quality of life?” was
analyzed using the three subscales for quality of life. First, a relationship was
explored between perceived parental support and the impact of diabetes
subscale. Quality of life, as assessed through the impact of diabetes subscale, did
not show a relationship with parental support (r2 = -.101, p = .313) [Table 7]. Also
no relationship was found between the quality of life-worries about diabetes
subscale and parental support (r2 = -.033, p = .741).

On the other hand, the third subscale of satisfaction with life showed
significant results. Even though, the analyses of parental support and the
satisfaction subscale for quality of life demonstrated a significant relationship
(r2 = .233, p < .05), a closer look at the data, suggested re-analysis. The scatter plot
revealed two influential outlying observations. In reviewing the raw data of
these two subjects, it was judged that the responses for the quality of life
satisfaction subscale were coded uncharacteristic to the responses of the other
two subscales (impact and worry). Lower scores on the impact and worry sub-
scales of 1 through 5 (1 being low and 5 being high) typically reflect better scores

(less impact, less worry), whereas, lower scores on the satisfaction scale indicate

6]

 

Table 7

Spearman’s rho Correlation Coefficient Values (N2102)

 

 

Variables Perceived Parental Support
. r2 p-

Adherence .375 .000“
Average HgbA1c -.146 .144
Quality of Life

Impact -.101 .313

Worry -.033 .741

Satisfaction .233 .018*
*p < 0.05

 

negative satisfaction. For these two subjects, impact scores and worry scores

were typically scored low (mostly ones and twos) indicating less impact of
diabetes and less worries. These two subjects also rated their overall health as
good or excellent. In contrast, on the satisfaction scale these two subjects scored
their satisfaction as mostly ones (very unsatisfied) or somewhat unsatisfied
which appears uncharacteristic compared to the responses on the other two
subscales. The conclusion of the researcher was that these two subjects
incorrectly scored their responses. Therefore, the analysis was rerun excluding
these outliers. Minus the two outliers, there was a significant relationship at

p < .01 (rs = .278) between perceived level of parental support and perceived
quality of life based on satisfaction scores. Null Hypothesis HO 3 was rejected

and research question 3 was answered affirmatively; ”There is a relationship

62

between adolescents’ perceived level of parental support and their perceived

quality of life.” Descriptive statistics for quality of life are presented in Table 8.

 

   

Tle 8
Description of Quality of Life

 

 

Variable Mean SD Possible Range Sample
Quality of Life
Impact 49.61 12.11 23-115 27-90
Worry 20.89 8.72 11-55 11-49
Satisfaction 64.41 12.18 17—85 18-85

Health Rating 3.06 .76 1-4 1-4

   

A multiple regression was run to determine if the independent variable of
perceived parental support would predict metabolic control, adherence, or
quality of life. The demographic variables of gender, age, grade, ethnicity, family
structure, and mother’s and father’s educational level were also entered into the
equation. The only variable to demonstrate a level of significance was adherence
(Multiple R = .414; R2 = .171; p < .01). Approximately 17% of the variation in
adherence was explained by perceived parental support.

Parenting Styles

The last nine research questions are related to the research objective to
investigate differences in adherence measures, metabolic control and perceived
quality of life between adolescents who perceive their parents to have

authoritative parenting styles and adolescents who perceive their parents to have

63

authoritarian, permissive or neglectful parenting styles. Analyses of the research
questions pursuant to this objective involved t-test analyses and ANOVA’s. The
t-test analyses using both the mean-split technique and the tertile-split technique
demonstrated similar results. T-test analyses and the ANOVA used in the K-
means cluster analyses resulted in additional findings. Differences in parenting
styles as they relate to adherence measures, metabolic control and quality of life
will be addressed separately.
Adherence

Research questions 4, 5, and 6 are concerned with differences in adherence
measures between adolescents who perceive their parents to have authoritative
parenting styles and adolescents who perceive their parents to have
authoritarian, permissive or neglectful parenting styles. These questions are
answered by testing the following null hypotheses:

HO 4 There is no difference in adherence between adolescents who perceive
their parents to have authoritative parenting styles and adolescents
who perceive their parents to have authoritarian parenting styles.

HO 5 There is no difference in adherence between adolescents who perceive
their parents to have authoritative parenting styles and adolescents
who perceive their parents to have permissive parenting styles.

HO 6 There is no difference in adherence between adolescents who perceive
their parents to have authoritative parenting styles and adolescents
who perceive their parents to have neglectful parenting styles.

After determining equality of variances, t-test analyses were performed to

test these null hypotheses. A significant difference was found in adherence

measures (based on frequencies) between adolescents who perceived their

64

parents to have authoritative parenting styles and adolescents who perceived
their parents to have authoritarian, permissive or neglectful parenting styles.

The mean-split technique resulted in a significant difference being found only
between adolescents who perceived their parents to have authoritarian and
neglectful parenting styles compared to authoritative parenting styles. The
means for the analysis are presented in Table 9 and the t values are presented in
Table 10. However, a significant difference was found for adolescents who
perceive their parents to have authoritative parenting styles compared to
adolescents who perceived their parents to have permissive or neglectful
parenting styles using the tertile-split technique (Tables 11 & 12).

Similar results were found using the K-means cluster technique. The K-means
cluster analysis groups are described in Table 13. Using the K—means cluster
groupings, t-tests showed a significant difference in adherence means between
the authoritative parenting style group and the authoritarian, permissive and
neglectful parenting style groups (Table 14). The one-way ANOVA resulted in
similar findings. A significant difference was found in adherence between the
different parenting style groups (Table 15).

Although the ANOVA showed a significant difference between parenting
style groups in terms of adherence, it did not specify in which groups the
differences were found. To help determine which groups demonstrated the
differences, a post hoc analysis was run using the Least Significant Difference
(LSD) analysis (Table16). The LSD analysis also demonstrated a significant
difference in adherence means between the authoritative parenting style group

and the authoritarian, permissive, and neglectful parenting style groups.

65

Null hypotheses HO 4, HO 5, and HO 6 were rejected and research questions
4, 5, and 6 were answered affirmatively; (4) ”Adolescents who perceive their
parents to have authoritative parenting styles have better adherence to their
prescribed treatment plan than adolescents who perceive their parents to have
authoritarian parenting styles,” (5) ”Adolescents who perceive their parents to
have authoritative parenting styles have better adherence to their prescribed
treatment plan than adolescents who perceive their parents to have permissive
parenting styles,” and (6) ”Adolescents who perceive their parents to have
authoritative parenting styles have better adherence to their prescribed treatment
plan than adolescents who perceive their parents to have neglectful parenting

styles.”

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Table 13

Descriptions of K-Means Cluster Groups

 

 

Variables n Mean SD
Adherence Frequencies
Authoritative 37 3.81 .357
Authoritarian 16 3.52 .531
Permissive 45 3.54 .434
Neglectful 4 3.25 .319
Metabolic Control -HgbA1c
Authoritative 37 8.39 1.17
Authoritarian 16 8.49 1.16
Permissive 45 8.36 1.09
Neglectful 4 8.47 .41
Quality of Life - Impact
Authoritative 37 46.05 11.33
Authoritarian 16 56.94 17.83
Permissive 45 49.51 8.84
Neglectful 4 54.25 13.94
Quality of Life — Worry
Authoritative 37 18.14 7.20
Authoritarian 16 25.75 11.44
Permissive 45 21.60 8.29
Neglectful 4 19.00 6.88
Quality of Life - Satisfaction
Authoritative 37 67.35 15.01
Authoritarian 16 60.50 11.41
Permissive 45 64.16 9.23
Neglectful 4 55.75 10.15

 

71

 

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72

Table 15

K-Means Clusters Between Parenting Style Groups ANOVA

 

 

Variables Between groups F p
Adherence
Frequency 4.400 .006**
Average HgbA1c .055 .983
Quality of Life
Impact 3.443 .020*
Worry 3.250 .025*
Satisfaction 2.007 .118
* p < 0.05

 

73

 

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74

Metabolic Control

Research questions 7, 8, and 9 ask ”Is there a difference in metabolic control
between adolescents who perceive their parents to have authoritative parenting
styles and adolescents who perceive their parents to have authoritarian,
permissive or neglectful parenting styles?” T-test analyses were also used to test
the following null hypotheses for these three questions:

HO 7 There is no difference in metabolic control (HgbA1c) between
adolescents who perceive their parents to have authoritative
parenting styles and adolescents who perceive their parents to have
authoritarian parenting styles.

HO 8 There is no difference in metabolic control (HgbA1c) between
adolescents who perceive their parents to have authoritative
parenting styles and adolescents who perceive their parents to have
permissive parenting styles.

HO 9 There is no difference in metabolic control (HgbA1c) between
adolescents who perceive their parents to have authoritative
parenting styles and adolescents who perceive their parents to have
neglectful parenting styles.

In these analyses, whether using the mean-split technique, the tertile—split
technique or the K-means cluster technique (Tables 10, 12, & 14) the results were
insufficient to reject the null hypotheses HO 7, HO 8, and H0 9. Similarly, no
significance results were found using the ANOVA with the K-means cluster
technique (Table 15). Research questions 7, 8, and 9 were answered negatively;
”There were no differences in metabolic control means (HgbA1c values) between

adolescents who perceive their parents to have authoritative parenting styles and

75

adolescents who perceive their parents to have authoritarian, permissive
or neglectful parenting styles.” Table 17 reflects the average HgbAlc’s mean,

standard deviation, and range from the sample population.

 

Table 17

HgbA1c Means, Standard Deviations, and Range (N2102)

 

Variable Mean SD Range

Average HgbA1c 8.40 1.10 6.3 - 12

 

Quality of Life
Research questions 10, 11, and 12 ask ”Is there a difference in perceived
quality of life between adolescents who perceive their parents to have
authoritative parenting styles and adolescents who perceive their parents to have
authoritarian, permissive or neglectful parenting styles?” The analysis for quality
of life was based on the three subscales for quality of life: impact, worry, and
satisfaction. The following null hypotheses were tested using the t-test analysis
with the mean—split and the tertile-split technique (Tables 10 8: 12).
H0 10 There is no difference in the perceived quality of life between
adolescents who perceive their parents to have authoritative
parenting styles and adolescents who perceive their parents to have

authoritarian parenting styles.

76

H0 11 There is no difference in the perceived quality of life between
adolescents who perceive their parents to have authoritative
parenting styles and adolescents who perceive their parents to have
permissive parenting styles.

H0 12 There is no difference in the perceived quality of life between
adolescents who perceive their parents to have authoritative
parenting styles and adolescents who perceive their parents to have
neglectful parenting styles.

According to Levene’s test for equal variances, all variables met the
assumptions for equal variances except for the quality of life-impact scores in the
analyses between the authoritative parenting style and authoritarian parenting
style and the quality of life-satisfaction scores in the analyses between the
authoritative parenting style and the neglectful parenting style. The latter was
not found significant and was not further analyzed. With respect to the quality of
life—impact scores, the non-parametric Mann-Whitney test was used to determine
the significance of this variable with respect to the difference in the authoritative
and the authoritarian parenting styles. Based on the Mann-Whitney test the
quality of life-impact scores were not found to be significant between
authoritative and authoritarian parenting styles (2 = -1.841, p = .066). All
analyses, therefore, (using the mean-split or tertile-split techniques) between
quality of life (impact, worry, or satisfaction) for adolescents who perceived their
parents to have authoritative parenting styles and adolescents who perceived
their parents to have authoritarian, permissive or neglectful parenting styles

failed to reject the null hypotheses pursuant to research questions 10, 11, and 12.

77

The K—means cluster analyses, for these research questions, however,
provided different results. T-tests were run for the K-means cluster analyses as
well. Levene’s test showed most variables met the assumptions for equal
variances except quality of life-impact and quality of life-worry in the analyses
between the authoritative parenting style and authoritarian parenting style and
the quality of life-satisfaction scores in the analyses between the authoritative
parenting style and the permissive parenting style. For each of these variables the
non-parametric Mann-Whitney test was used to determine the significance of
these variables with respect to the different parenting group analyses. Based on
the Mann-Whitney test the quality of life-impact scores and quality of life-worry
scores were found to be significant between authoritative and authoritarian
parenting styles (impact, 2 = -2.318, p = .020; worry, 2 = -2.545, p = .011).
Additionally, the Mann-Whitney test also showed quality of life-satisfaction
scores to be significant between authoritative and permissive parenting styles

(2 = -2.168, p = .030) whereas the t-test did not show significance (Table 18).

   

—ble—8“ "——
Non—Parametric Tests — Mann-Whitney

 

 

Variable Parenting Style Parenting Style Mann-Whit. Sig.
Cluster Cluster Z p
Quality of Life
Impact Authoritative Authoritarian -2.318 .020*
Worry Authoritative Authoritarian -2.545 .011*
Satisfaction Authoritative Permissive ~2.168 .030*
*p < .05

 

78

Additionally, an ANOVA was run to test for differences among the means, to
complement the t-test analyses and further validate the results. In this analysis a
significant difference was found between parenting groups for quality of life-
impact, and qualify of life-worry (Table 15). The test for homogeneity of variance
did show that the quality of life-impact score also violated the equal variance
assumption. As the normality of the distribution was questionable, the Kruskal-
Wallis non-parametric test was run. The results (Chi-Square = —8.402, df = 3, p =
.038) suggest a significant difference with respect to center (medians) in terms of
quality of life-impact and the means for the different parenting groups.

To help determine which groups demonstrate the differences a post hoc
analysis was run using the Least Significant Difference (LSD) analysis (Table16).
Related to quality of life-impact, there was a significant difference between the
authoritative parenting style group and the authoritarian parenting style group.
Additionally, there was a significant difference between the authoritative
parenting style group and the authoritarian parenting style group using the
quality of life-worry scale as well. Based on these results it was concluded that
null hypothesis H0 10 be rejected and research question 10 be answered
affirmatively: ”Adolescents who perceive their parents to have authoritative
parenting styles have better perceived quality of life than adolescents who
perceive their parents to have authoritarian parenting styles.”

Because equal variances and normal distribution assumptions were not
always met, additional non-parametric post hoc procedures were completed.
Since the quality of life-impact score violated the equal variance assumption, the
Mann—Whitney test was used to compare each paring of parental groups

separately, related to the quality of life—impact scores. In this analysis, quality of

79

life—impact was found to be significant between authoritative and authoritarian
parenting style groups (Z = -2.318, p = .020). In addition, a significant difference
was found between the authoritative and permissive parenting style groups (Z =
-2.117, p = .034). Furthermore, because the distribution graphs for quality of life-
worry were skewed to the right, even though the variances were determined
satisfactorily equal, a Kruskal—Wallis test was performed. The results showed a
significant difference between the quality of life-worry and the different
parenting styles (Chi-Square = 9.347, df = 3, p = .025). In light of these results one
would also reject null hypothesis H0 11 and answer research question 11
affirmatively; ”Adolescents who perceive their parents to have authoritative
parenting styles have better perceived quality of life than adolescents who
perceive their parents to have permissive parenting styles."

There was not enough evidence demonstrating a significant difference in the
perceived quality of life between adolescents who perceived their parents to
have authoritative parenting styles and adolescents who perceived their parents
to have neglectful parenting styles. Based on this analysis, research question 12 is
answered negatively and null hypothesis H0 12 is accepted: ”There is no
difference in the perceived quality of life between adolescents who perceive their
parents to have authoritative parenting styles and adolescents who perceive their
parents to have neglectful parenting styles.”

Table 19 summarizes the significant t-tests, ANOVA’s, and the non—
parametric tests used in the above analyses. The identified results are

represented by the p values.

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81

A multiple regression was also run to determine if the independent variable
of parenting style would predict metabolic control, adherence, or quality of life.
The demographic variables of gender, age, grade, ethnicity, family structure, and
mother’ s and father’ 5 educational level were also entered into the equation. As in
the regression analysis with parental support, the only variable to demonstrate a
level of significance was adherence (Multiple R = .345; R2 = .119; p < .01). In this
case, parenting style as defined by the K-means cluster analysis can predict
adherence, but it only explains approximately 12% of the variability in

adherence.

82

CHAPTER 5

SUMMARY AND DISCUSSION

This final chapter will restate the research problem and review the major
methods used in the study. The major sections of this chapter summarize the
results and discuss their implications.

This study explored specific dimensions of parental support (perceived
support and parenting styles) that research suggested could enable the
adolescent, 12 to 18 years of age, to effectively manage his or her insulin
dependent diabetic health care and promote a sense of quality of life. This cross-
sectional quantitative causal comparative study was carried out in a natural
setting. The unit of analysis was the adolescent between 12 and 18 years of age.
Adolescents were targeted if they were in the designated age range, had been
diagnosed with insulin dependent diabetes for at least one year, met the criteria,
and attended a large pediatric endocrinology clinic in West Michigan.
Adolescents were approached as they came to the clinic for their quarterly visit
to the pediatric endocrinologist. Most adolescents took the questionnaires home
for completion and returned them in a pre-addressed stamped envelope.

The focus of the study was the parent-adolescent relationship and how
dimensions of parental support through perceived support and parenting style
would facilitate the adolescents’ management of their diabetes. The family
ecological model with its emphasis on family systems, interactions, and

environments grounded this research.

83

This study found that perceived parental support and authoritative parenting
styles do impact the adolescents’ ability to manage their diabetic health care as
well as favorably influence their quality of life. Table 20 summarizes the results
of the null hypotheses outcomes. In the following paragraphs, the results will be
summarized as they relate to the independent variables, perceived parental
support and parenting styles.

Perceived Parental Support

The research objective for the first three hypotheses was to investigate the
relationship between perceived levels of parental support and adolescents’
adherence measures, metabolic control, and perceived quality of life. This
discussion follows.

Adherence. The analyses showed a significant relationship between parental
support and adolescents’ adherence with their diabetic health management. This
supports the findings of other researchers that there is a relationship between
supportive behaviors of parents and adherence measures of adolescents with
diabetes (Burroughs et al. 1997). Adolescents’ diabetic management is better
when parents are involved, responsive and caring (Anderson et al. 1997;
Burroughs et al. 1993; Hanna & Guthrie, 2001; Hanson et al. 1987a; Hanson et al.
1987c;J(yngas & Rissanen, 2001). In this study, approximately 17% of the
variation in adherence was explained by perceived parental support.

Metabolic Control. There was no relationship found between perceived
parental support and metabolic control. On one hand, this was an expected
result. Other researchers also failed to find a relationship between positive and

encouraging parental support and metabolic control (Hanson, DeGuire, et al.

84

 

Table 20

Summary of Null Hypotheses Outcomes

 

 

Null Hypothesis Variables Outcomes
Independent Dependent Accepted / Rejected

HO 1 Parental Support Adherence
HO 2 Parental Support Metabolic Control
HO 3 Parental Support Quality of Life
HO 4 Parenting Style

Authoritative / Authoritarian Adherence
HO 5 Parenting Style

Authoritative / Permissive Adherence
HO 6 Parenting Style

Authoritative/ Neglectful Adherence
HO 7 Parenting Style

Authoritative/ Authoritarian Metabolic Control
HO 8 Parenting Style

Authoritative/ Permissive Metabolic Control
HO 9 Parenting Style

Authoritative / Neglectful Metabolic Control
HO 10 Parenting Style

Authoritative/ Authoritarian Quality of Life
H0 11 Parenting Style

Authoritative/ Permissive Quality of Life
HO 12 Parenting Style

Authoritative/ Neglectful Quality of Life

 

85

1992; Schafer et a1. 1983). Some researchers, however, have demonstrated a direct
effect between adherence and metabolic control (Hanson et al. 1987a). As this
study showed a significant relationship between parental support and
adherence, one might expect to see a relationship between parental support and
metabolic control. However, in this study metabolic control and adherence were
not related. Most likely, there are other factors involved that affect metabolic
control that were not accounted for in this study. For example, Hanson et al.
(1987c), while looking to see if parental support would mediate a link between
stress and metabolic control, found ”stress” to have a direct link to metabolic
control. In 1989, Hanson et al. found associations between family support and
metabolic control to be mediated by the duration of diabetes. Neither stress nor
length of diabetes were directly measured in this study.

Additionally, physiological factors such as hormonal changes related to
puberty may be another factor. Hormonal changes have been associated with
decreased sensitivity to insulin, requiring more insulin in even healthy
adolescents. The need for more insulin is compounded for the adolescent with
diabetes contributing to the difficulty in achieving good metabolic control (Arniel
et al. 1986). It is still interesting to note, as stated earlier, that a negative trend in
the relationship between parental support and metabolic control was found. As
parental support scores increased, there was a non-significant trend for the 9
average HgbA1c to decrease. It is possible that a statistically significant
relationship might be seen with a larger sample.

Quality of Life. Perceived parental support was correlated with quality of life
as measured through satisfaction. This was consistent with what has been found

in the literature. Grey et al. (1998) found that adolescents who were more

86

satisfied with their quality of life reported having families that were perceived as
more supportive (warm and caring). Adolescents who were more satisfied with
their quality of life, reported fewer symptoms of depression and found coping
with diabetes easier and less upsetting.

In this present study, adolescents felt pretty good about their diabetes overall.
They expressed low to moderate impact and worry about their diabetes and
moderate satisfaction related to their quality of life.

On the other hand, perceived parental support, although correlated with
quality of life as measured through satisfaction, did not correlate with quality of
life as measured though impact or worry. Grey et al. (1998) also reported family
functioning, as measured by the Family Adaptability and Cohesion Scale, did not
significantly correlate with quality of life. This same study found some
adolescents reporting diabetes as having a large impact on their life. Adolescents
who typically reported more impact were more likely to see the management of
diabetes as harder and more upsetting. Also, adolescents who worried more had
more symptoms of depression and found coping with diabetes more difficult It
would seem that adolescents who see their diabetic management as harder or
more difficult to cope with might tend to respond differently to behaviors
expressing caring or parental support measures related to diabetic care. Other
factors such as the stress of diabetes may be intervening.

Parenting Style

The second research objective was to investigate differences in adherence
measures, metabolic control and perceived quality of life between adolescents
who perceive their parents to have authoritative parenting styles and adolescents

who perceive their parents to have authoritarian, permissive, or neglectful

87

parenting styles. Three different methods were used to categorize adolescents’
scores reflecting their perceptions of their parents’ responsiveness and
demandingness in terms of parenting style. The K-means cluster analyses
technique tended to provide more clarity in distinguishing between the
authoritative, authoritarian, permissive and neglectful groups compared to the
median—split or tertile-split techniques and is a preferred method for some
researchers (N. Darling, personal communication, March 16, 2006). It is
important to note that this categorization was purely heuristic--for research
purposes only-~and was not meant to diagnose any certain parenting style group.
The parenting style typology was meant to describe normal variations in
parenting and was not intended to identify deviant parenting practices such as
seen in neglectful homes (Darling, ILd.). The discussion follows.

Adherence. Adolescents who perceived their parents to have authoritative
parenting styles had better adherence to their prescribed treatment plan than
adolescents who perceived their parents to have authoritarian, permissive or
neglectful parenting styles. This was an anticipated finding based on the social
support literature on parenting style. Family cohesion is often associated with
better adherence whereas family conflict is associated with poorer adherence
(Hauser et al. 1990; Miller-Johnson et al. 1994). It was also a new finding.
Although, many researchers investigating parental support studied certain
characteristics of parenting styles such as warmth and control, no one has
studied the parenting style typology exclusively with adolescents with diabetes.

Characteristics of the authoritative parent can influence adherence in a
number of ways. Authoritative parenting can foster a positive family milieu

resulting in reduced family conflict and/ or an increase in family cohesion. These

88

children are usually happier, exhibit higher self-esteem, and perform better
socially and academically. Social competence has also been associated with better
adherence (Hanson et al. 1987c).

Metabolic Control. There is no difference in metabolic control (HgbA1c)
between adolescents who perceive their parents to have authoritative parenting
styles and adolescents who perceive their parents to have authoritarian,
permissive or neglectful parenting styles. This is consistent with the result that
there was no relationship between parental support and metabolic control and
was an expected finding. Metabolic control seems to be associated with other
factors such as stress as already identified above. The study by Hanson et al.
(1987c) showed that stress was directly associated with metabolic control and
that ”the interaction between parental support and stress did not buffer the
negative effects of stress” (p. 532).

Quality of Life. Based on one or more of three measures of quality of life
(impact, worry, or satisfaction) adolescents who perceived their parents to have
authoritative parenting styles had better perceived quality of life than did
adolescents who perceived their parents to have authoritarian or permissive
parenting styles. This statement reflects two of the alternative hypotheses that
were supported. These findings were in slight contrast to analyses between
parental support and quality of life which only found satisfaction to be
significantly correlated with parental support. This may be explained by the fact
that the tools are measuring different dimensions of the parent-child experience.
The parental support questionnaire focused on enacted support related to
diabetic management with an element of caring. The parenting style

questionnaire focused on the ”emotional climate in which particular parent-child

89

interactions occur” (Darling & Toyokawa, 1997, p. 2). It would be expected that
perceptions of quality of life would be higher in an environment characterized by
warmth, involvement, high expectations and gentle guidance such as seen with
an authoritative parenting style.

Limitations

One of the limitations of this study was sample size. Although it was large
enough for some analyses, it became too small when the sample was broken
down into sub-groups, as when analyzing the parenting style groups. Sample
size affects the power of the study. For a power of .80 and a moderate effect size,
a sample size of approximately 120 subjects would have been desirable. Even
more subjects may have been helpful depending on how they fell into the
different parenting style groups. For example, there were only four subjects in
the neglectful parenting style group (K-means cluster analysis). The small sample
size of this group precludes the reliability and validity of any analyses done with
that group. It also explains why no significance was found in all but one of the
analyses involving that group.

Additionally, the sample may not be representative of the entire population
of adolescents with Type 1 diabetes, thus affecting the generalizability of this
study. In this particular study there was very little ethnic diversity. It would be
helpful to obtain national, state, or county-wide registries to determine actual
ethnic demographics. Ideally sample populations could be drawn from more
than one geographic location to assure better diversity within the groups.

Implications for Practice

As responsibility for diabetic health care management transitions from parent

to child from late childhood through adolescence, parents need to be made

90

aware of the crucial role they play in fostering good diabetic health care
management. Positive parental support was shown to be a significant predictor
of adherence. It has also been associated with better quality of life. This has
implications for clinical practice. Research has shown that adolescents need
acceptance, genuine interest, motivation, encouragement, and positive feedback
(Anderson et al. 1997; Kyngas, 8: Rissanen, 2001 ; LaGreca et al. 1995). Health care
providers are in a position to share the significance of parental support with
parents of adolescents with diabetes and to help parents distinguish helpful
involvement from more intrusive involvement. According to Grey et al. (1998),
the challenge is to find ”parental involvement that is individualized for the
adolescent, without risking poorer control from over-involvement or under-
involvement” (p. 913). The emphasis should be on the adolescent. Practitioners
must recognize that adolescents are worried about their future health, and may
need help in attempting to balance these concerns with other developmentally
appropriate tasks of adolescence (Farro, 1999). Practitioners and parents need to
understand the diabetic experience of the adolescent to help determine the
appropriate support, family environment, and parenting activities that would
foster good diabetic health management.
Implications for Future Research

Authoritative parenting styles can have positive outcomes for adolescents
with Type 1 diabetes in terms of adherence and quality of life. To better
understand the influence of the authoritative parent on an adolescent with
diabetes and his or her diabetic health management, more research is needed to
further explore the milieu, the relationships, and interactions between the parent

and child/ adolescent. Qualitative studies of adolescents with authoritative

91

parents may give better insight into the environment, interactions, day-to—day
challenges and strategies related to management of Type 1diabetes that
contribute to better outcomes. Additionally, as adolescents become more capable
of self-management, the emphasis should be on interdependence. Parents need
to remain involved. "Focusing on autonomy of the adolescent and facilitating
interdependence between parent and adolescents is an important direction for
research” (Anderson, 2001,p.649).
Conclusion

Successful management of Type1 diabetes in adolescents remains a challenge.
Research has shown that adolescents experience better outcomes related to
management when parents remain involved. The new theoretical focus for
adolescents with diabetes is to move from ”independence to interdependence"
(Anderson, 2001). Parents who are perceived to be supportive and authoritative
in their parenting style seem to promote a sense of interdependence as they
encourage and promote adolescent autonomy. Autonomous individuals would
seem to have less worries, more satisfaction, and better health management
outcomes. More research needs to be done on how parents can nurture the
development of more autonomous individuals in order to facilitate better health
care outcomes for adolescents with Type 1 diabetes. Metabolic control may not
be the only outcome variable to measure good diabetic health. Quality of life is

important. Good parenting can foster this.

92

 

APPENDICES

93

APPENDIX A

PARENTAL SUPPORT AND ADOLESCENT HEALTH MANAGEMENT OF

DIABERTES INFORMATION SHEET

94

Parental Support and Adolescent Health Management of Diabetes

Information sheet

 

ID #
What is your sex? [:| Male [3 Female
What is your ethnic group? C] Black D White
Hispanic [:I Asian American
[:I American Indian D Other
When were you born? / / Age

 

 

Month Day Year

What is your family structure?
[:1 Two natural parents E] Single / divorced parent

E] Stepfamily D Other
How much education did your parents complete?
Father Mother
[:1 High school or less C] High school or less
[I College completion or more [:I College completion or more

How old were you when you were first told you had diabetes?

In what grade are you currently enrolled?

 

Approximately how many days of school did you miss in the last year because of
your diabetes?

Please do not place your name on any subsequent sheet of paper/ questionnaire.
In the following questionnaires please answer each question by circling or
checking the answer that best reflects your choice. Thank you for being honest
and thorough. There are no wrong answers.

95

APPENDIX B

HGBAIC FORM

96

HgbA1c Form

Initials ID #

 

 

HgbA1c — Please record the last four values post the honeymoon phase.

I.

 

 

 

 

97

APPENDIX C

PARENTAL SUPPORT QUESTIONNAIRE

98

PARENTAL SUPPORT QUESTIONNAIRE

Teens’ Perceptions of Parents’ Help with Diabetes Care: Think about the things
that your parents do to help you be responsible for your diabetes care in the past 3
months. First, circle the number or check the box that describes how often your parents
did the following things. Then for the things they have done, circle the number or chgl;
firebox that describes how helpful these things were. Give insulin means pump or

injection. There are no right or wrong answers.

 

 

 

 

In the past 3 months: How often have How helpful was it
your parent(s): when your parent(s):
None of All Not at All Very
of the the Helpful Helpful
time time

 

1. Asked you ”what do 1 2 3 4 5
you think needs to
done about your
insulin.”

1 2 3 4 5

 

 

2. Showed you how to 1 2 3 4 5
figure insulin dose.

 

3. Suggested that you 1 2 3 4 5
give insulin before
telling you to do it.

 

 

 

4. Answered your 1 2 3 4 5
questions about *
figuring insulin dose.

 

 

 

 

 

 

 

 

 

 

 

 

 

END OF PARENTAL SUPPORT QUESTIONNAIRE

99

APPENDIX D

PARENTING STYLE INVENTORY - II

100

PARENTING STYLE INVENTORY - II

 

 

 

 

Please indicate how much you agree or 5: Strongly Agree
disagree with the following statements: 4: Agree
(Please answer all questions where applicable g= 311i" Between

. . = 15a 88
for the parent(s) you live With) 1: Stronggly disagree
Mother Strongly flagree Strongly Agree
1. My mother really expects me to follow family rules. 1 2 4 5
2. My mother doesn’ t really like me to tell her my troubles. 1 2 4 5
3. My mother tells me that her ideas are correct and that I

shouldn’t question them.

My mother really lets me get away with things

My mother hardly ever praises me for doing well.

My mother respects my privacy.

If I don’t behave myself, my mother will punish me.

I can count on my mother to help me out if I have a problem.
My mother gives me a lot of freedom.

10. My mother points out ways I could do better

11. My mother spends time just talking to me

12. My mother makes most of the decisions about what I can do
13. When I do something wrong, my mother does n_ot punish me.
14. My mother and I do things that are fun together

15. My mother believes I have a right to my own point of view.

990N991?
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Father Strongly msagree Strongly Agree
1. My father really expects me to follow family rules. 1 2 3 4 5
2. My father doesn’t really like me to tell him my troubles. 1 2 3 4 5
3. My father tells me that his ideas are correct and that I

shouldn’t question them. 1 2 3 4 5
4. My father really lets me get away with things. 1 2 3 4 5
5. My father hardly ever praises me for doing well. 1 2 3 4 5
6. My father respects my privacy 1 2 3 4 5
7. If I don’t behave myself, my father will punish me. 1 2 3 4 5
8. I can count on my father to help me out if I have a problem. 1 2 3 4 5
9. My father gives me a lot of freedom. 1 2 3 4 5
10. My father points out ways I could do better. 1 2 3 4 5
11. My father spends time just talking to me. 1 2 3 4 5
12. My father makes most of the decisions about what I can do. 1 2 3 4 5
13. When I do something wrong, my father does 119; punish me. 1 2 3 4 5
14. My father and I do things that are fun together. 1 2 3 4 5
15. My father believes I have a right to my own point of view. 1 2 3 4 5

End of Parenting Style Inventory

101

APPENDIX E

DIABETES BEHAVIOR RATING SCALE

102

Diabetes Behavior Rating Scale

B. MODIFICATIONS OF DIABETES CARE
PLAN

There are some adjustments that need to be made
in diabetes care in certain situations. These may
or may not be done on a daily basis. We are
interested in knowing how often these behaviors
are practiced when called for.

Wherritisappropriatetodqhowoflen:

16. are meals and snacks changed because of amount of
exercise?

17. is insulin dose changed when physical activity
changes in order to prevent low blood sugar?

l8. is insulin dose changed when meal times are changed
(e.g., late dinner or holiday meal)?

19. are exercise levels changed because of blood sugar
levels?

C. INTERVENTION BEHAVIORS

There are also actions that are taken only when
your child has symptoms of "low" or "high” blood
sugar. Many of these actions are listed below. We
are interested in knowing how often these
behaviors are practiced when your child has
symptoms.

How altar:

20. are blood sugar levels tested when blood sugar levels
might be too 'low' or ”high”?

2]. is help obtained for diabetes in school. home. or social
settings?

22. is insulin dose changed based on resulls of blood
sugar levels?

23. is "fast sugar” eaten when blood sugar level is 'low'?

24 is ”regular food' eaten after needing to lake
“fast-sugar“?

C) Chicago Diabetes Research and Training Center, I995

104

Page 3

 

 

 

 

 

How Often Done as Degree of Child's
Prescribed Responsibility

5 = Always A = Child totally responsible
4 = Usually B = Child mostly responsible
3 = About half the lime C = Shared Responsibility
2 = Seldom D = Parent mostly responsible
l = Never E 2 Parent totally responsible
l 2 3 4 5 A B C D E

l 2 3 4 5 A B C D E

l 2 3 4 5 A B C D E

l 2 3 4 5 A B C D E

l 2 3 4 5 A B C D E

l 2 3 4 S A B C D E

l 2 3 4 5 A B C D T

I 2 3 4 5 A B C D E

l 2 3 4 5 A B C D l‘

 

Diabetes Behavior Rating Scale Page 2

There are many behaviors required on the part of parents and their children to manage diabetes on a day-to-
day basis. Some of them are described below. We would like to brow how often these behaviors are practiced.
We would also like to know how much responsibility your child takes in his or her own diabetes care.

 

 

 

 

 

 

 

 

How Often Done as Degree of Child's
A. DAILY PREVENTION BEHAVIORS Prscribed Responsibility
_ _ . _ 5 : Always A = Child totally responsible
The followmg behavzors are done on a daily basis. 4 = Usually B = Child moslly responsible
They are intended to prevent symptoms of 3 : About half the lime C = Shared Responsibility
hypoglycemia and hyperglycemia and to help keep f; :1“ 'do'“ :‘Emmtxflly '°SP°"§::IC
. = = ar I I'CSPOI'ISI C
diabetes under control. "a c" y
How dlen:
I. are meals planned according to the food exchange I 2 3 4 5 A B C D E
system?
2. are foods weighed and measured? | 2 3 4 5 A B C D E
3. are food labels used for planning meals? I 2 3 4 5 A B C D E
4. are meals eaten at the same time each day? l 2 3 4 5 A B C D E
5. are snacks eaten at the same time each day? I 2 3 4 5 A B C D E
6. is insulin given daily in the dose prescribed? | 2 3 4 5 A B C D E
7. is insulin dose written in a daily log? | 2 3 4 5 A B C D E
8. is insulin drawn up correctly? 1 2 3 4 5 A B C D E
9. is insulin injeclion given correctly? I 2 3 4 5 A B C D E
ID. are insulin injections given in different parts of the I 2 3 4 5 A B C D E
body?
II. are insulin and supplies cared for in the right way? I 2 3 4 5 A B C D E
I2. are blood sugar levels tested when it should be I 2 3 4 5 A B C D L
(according to doctor's instructions)?
I3. are results of blood sugar tests written in a daily log? | 2 3 4 5 A B C D E
I4. is a quick-acting carbohydrate ("fast sugar“) carried?
I 2 3 4 5 A B C D I‘
IS. is diabetes identification worn?
I 2 3 4 5 A B C D E

0 Chicago Diabetes Research and Training Center, I995

103

Diabetes Behavior Rating Scale

D. ILLNESS

Diabetes care sometimes changes when your child
has the flu or another illness.

When your child is ill, how often:
25. are extra liquids given?

21). is the doctor/nurse called for changes in insulin dose
when the child is unable to eat?

27. is blood sugar level tested every 3 to 4 hours?

28. is urine tested for ketoncs?

E. SUPPLIES

Diabetes care requires the use of medical supplies.
We are interested in knowing how these supplies
are maintained.

Howoltui:
29. is there enough insulin for shots?
30. are there enough insulin syringes?

3|. is there enough supplies for testing blood sugar
levels?

32. is there enough supplies for checking un'nc ketonc
levels?

F. OTHER DIABETES CARE PRACTICES

There are other important diabetes care behaviors
that do not occur very often. Please answer the
following questions about these behaviors:

33. How often are meals eaten away from the home (cg, at
restauraan. parties) considered in making the daily

meal plan?

34. When necessary. how often are people who make food
told about the child's diabetes?

35. When urine ketoncs are tested. how often are the
results written in log book?

0 Chicago Diabetes Research and Training Center, I995

105

Page 4

 

 

 

 

 

How Often Done as Degree of Child's
Prescribed Responsibility

5 = Always A = Child totally responsible
4 = Usually B = Child mostly responsible
3 = About half the time C = Shared Responsibility
2 = Seldom D = Parent mostly responsible
I = Never E = Parent totally responsible
I 2 3 4 S A B C D E

I 2 3 4 5 A B C D E

l 2 3 4 5 A B C D E

l 2 3 4 5 A B C D E

I 2 3 4 5 A B C D E

I 2 3 4 5 A B C D F.

I 2 3 4 5 A B C D E

I 2 3 4 5 A B C D E

ABCDE

ABCDE

ABCDIZ

 

Diabetes Behavior Rating Scale

F. OTHER DIABETES CARE PRACI'ICFS

(Continued)

How often:

36. are key people in your child‘s life told how to treat
'low' blood sugar?

37. are health care providers called for changes in insulin
dose because of frequent 'high' or "low' blood sugar
levels?

38. is the doctor notified when your child has severe
diabetic symptoms (e.g., drinking a lot. needing fast
sugar a lot)?

39. are all health care providers (physicians. school

nurses. dentists. and so on) told that your child has
diabetes?

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106

Page 5

 

 

 

How Oflen Done as Degree of Child's
Prescribed Responsibility
5 = Always A = Child totally responsible
4 2 Usually B = Child mostly responsible
3 = About half the time C = Shared Responsibility
2 = Seldom D = Parent mostly responsible
l = Never E = Parent totally responsible

 

 

 

l 2 3 4 5
I 2 3 4 5
I 2 3 4 5

 

APPENDIX F

DIABETES QUALITY OF LIFE —YOUTH - SCALE

107

DIABETES QUALITY OF LIFE —YOUTI-I

 

 

 

 

Please indicate how you agree or disagree with ii 322:”
the following statements: 3: About half the time
2: Seldom
1: Never

Impact of Diabetes Never Always
1. How often do you feel pain associated with the treatment

for your diabetes? 1 2 3 4 5
2. How often are you embarrassed by having to deal with

your diabetes in public? 1 2 3 4 5
3. How often do you feel physically ill? 1 2 3 4 5
4. How often does your diabetes interfere with your family life? 1 2 3 4 5
5. How often do you have a bad night’s sleep? 1 2 3 4 5
6. How often do you find your diabetes limiting your social

relationships and friendship? 1 2 3 4 5
7. How often do you feel good about yourself? 1 2 3 4 5
8. How often do you feel restricted by your diet? 1 2 3 4 5
9 How often does your diabetes keep you from driving a car

or using a machine (for example, a typewriter)? 1 2 3 4 5
10. How often does your diabetes interfere with your exercising? 1 2 3 4 5
11. How often do you miss work, school, or household duties

because of your diabetes? 1 2 3 4 5
12. How often do you find yourself explaining what it means to

have diabetes? 1 2 3 4 5
13. How often do you find that you diabetes interrupts your

leisure-time activities? 1 2 3 4 5
14. How often do you get teased because you have diabetes? 1 2 3 4 5
15. How often do you feel that because of your diabetes you go

to the bathroom more than others? 1 2 3 4 5
16. How often do you find you eat something you shouldn’t

rather than tell someone that you have diabetes? 1 2 3 4 5
17. How often do you hide from others the fact that you are

having an insulin reaction? 1 2 3 4 5

18. How often do you find that your diabetes prevents you from

participating in school activities (for example, being active in a

school play, being on a sports team, being in a school band, etc.)? 1 2 3 4 5
19. How often do you find that your diabetes prevents you from

going out to eat with your friends? 1 2 3 4 5
20. How often do you feel that your diabetes will limit what job

you will have in the future? 1 2 3 4 5
21. How often do you find that your parents are too protective

of you? 1 2 3 4 5
22. How often do you feel that your parents worry too much

about your diabetes? 1 2 3 4 5
23. How often do you find that your parent’s act like diabetes

is their disease and not yours? 1 2 3 4 5

108

Worries About Diabetes Never Always

1. How often do you worry about whether you will get married? 1 2 3 4 5
2. How often do you worry about whether you will have children? 1 2 3 4 5
3. How often do you worry about whether you will not get a job

you want? 1 2 3 4 5
4. How often do you worry about whether you will pass out? 1 2 3 4 5
5. How often do you worry about whether you will be able to

complete your education? 1 2 3 4 5
6. How often do you worry that your body looks different

because you have diabetes? 1 2 3 4 5
7. How often do you worry that you will get complications from

your diabetes? 1 2 3 4 5
8. How often do you worry about whether someone will not go

out with you because you have diabetes? 1 2 3 4 5
9. How often do you worry that your teachers treat you differently

because of your diabetes? 1 2 3 4 5

10. How often do you worry that your diabetes will disrupt

something you are currently doing in school (for example, act in

a play, continue on a sports team, be in a the school band, etc.)? 1 2 3 4 5
11. How often do you worry that because of your diabetes you are

behind in terms of dating, going to parties, and keeping up with

your friends? 1 2 3 4 5

 

5: Very satisfied

4: Somewhat satisfied
3: Neither

2: Somewhat unsatisfied
1: Very unsatisfied

 

 

 

Satisfaction With Life Very Qnsatisfied - Very Satisfied
1. How satisfied are you with the amount of time it takes to

manage your diabetes? 1 2 3 4 5
2. How satisfied are you with the amount of time you spend

getting checkups? 1 2 3 4 5
3. How satisfied are you with the time it takes to determine your

sugar level? 1 2 3' 4 5
4. How satisfied are you with your current treatment? 1 2 3 4 5
5. How satisfied are you with the flexibility you have in your diet? 1 2 3 4 5
6 How satisfied are you with the burden your diabetes is placing

on your family? 1 2 3 4 5
7. How satisfied are you with your knowledge about your diabetes? 1 2 3 4 5
Speaking Generally:
8. How satisfied are you with your sleep? 1 2 3 4 5
9. How satisfied are you with your social relationships? 1 2 3 4 5
10. How satisfied are you with your work, school, and household

activities? 1 2 3 4 5
11. How satisfied are you with you’re the appearance of your body? 1 2 3 4 5

109

(Satisfaction With Life) Very Qgsatisfied Very Satisfied

12. How satisfied are you with you’re the time you spend

exercising? 1 2 3 4 5
13. How satisfied are you with your leisure time? 1 2 3 4 5
14. How satisfied are you with life in general? 1 2 3 4 5
15. How satisfied are you with your performance in school? 1 2 3 4 5
16. How satisfied are you with how your classmates treat you? 1 2 3 4 5
17. How satisfied are you with your attendance in school? 1 2 3 4 5

Compared with others your age, would you say your health is?
E] Excellent
I] Good
Fair

D
E] Poor

END OF DQOLY

110

APPENDIX C

CONSENT FORMS

111

Research Informed Consent a_n_d_ HIPAA Authorization/Consent for Release of
Health Information for Research Purposes

PARENTAL SUPPORT AND ADOLESCENT HEALTH MANAGEMENT OF
DIABETES

Principal Investigator: Dr. Robert Boger, PhD. Michigan State University
Secondary Investigator: Susan M. Mlynarczyk, RN. MSN. (Spectrum-health), Pth,
MSU

”You” refers to you or your child

INTRODUCTION:

You are being asked to participate in a research study. In order to decide whether or not
you should agree to be part of this research study, you should receive enough
information about its risks and benefits to make a judgment. This process is called
informed consent.

This consent form gives detailed information about the research study, which will be
discussed with you. If you wish to participate in this study, you will be asked to sign
this form and you will be given a signed copy for your records.

NATURE AND PURPOSE OF THIS STUDY:

This study will explore the nature of support that enables the adolescent to most
effectively manage their diabetic health care. The overall purpose of this research is to
investigate varying degrees of parental support and how this may affect adolescents’
diabetic health management, metabolic control and perceived quality of life for Grand
Rapids area adolescents aged 12 to 18, diagnosed with insulin dependent diabetes.

Your adolescent is being asked to volunteer for this study because he/ she is between the
ages of 12 and 18 years, has had insulin dependent diabetes for at least one year, resides
with at least one parent, speaks and reads English, has a diabetes treatment regimen that
includes insulin injections or use of the insulin pump, glucose monitoring, meal
planning and exercise; and does not have any diagnosed mental health issues.

This study will be conducted over the next three months with completion of data
analysis in December of 2005. A total of around 150 adolescents at Spectrum Health are
expected to participate in the study.

STUDY PROCEDURES:

Your participation is limited to the time it will take to fill out the demographic sheet and
the four survey instruments. Once this is completed, your participation is complete. If
you should run out of time to complete the questionnaires, you will be given a stamped
addressed envelope in which to return your completed questionnaires at your earliest
convenience.

It is expected that you will be able to complete the questionnaires while waiting for your
different appointments with clinic staff. It should take approximately 20 to 25 minutes to
complete all four questionnaires and the demographic sheet. When available a quiet
room will be provided for you to fill out the questionnaires in private.

All adolescents meeting the criteria will be invited to participate in this study during the
designated time frame until approximately 150 adolescents are selected.

112

RISKS. INCONVENIENCES AND DISCOMFORTS:

As this study mainly involves your responses to questionnaires, there is minimal risk
involved. Any inconveniences incurred may be related to the time it takes to answer the
questionnaires. For any questionnaires taken home, reminder cards/ calls may follow to
encourage completion and return of surveys.

POTENTIAL BENEFITS:

You may not directly benefit from your participation in this study. However, your
participation may contribute to further understanding the social factors affecting the
management of diabetes for adolescents. Participating in this study may result in no
benefit to you.

COSTS/PAYMENT FOR STUDY PARTICIPATION:
There is no cost to you for participating in this study. The research investigators will
cover any potential costs related to questionnaires being returned by mail.

Payment: Subjects completing the questionnaires will be mailed a $10 check for their
participation. Additionally, each participant will be entered into a raffle drawing where
$50 gift certificates will be given to four different individuals.

VOLUNTARY PARTICIPATION:

Participation in this research study is voluntary and you may refuse to enter the study or
may discontinue participation in the study at any time without jeopardizing present and
future medical care and treatment to which you are entitled. You will be informed of
any changes in the nature of the study or in the procedures, which may be related to
your willingness to continue participation in the study.

CONFIDENTIALITY:

The investigators, the clinic staff, delegated representatives from Spectrum Health,
and/ or the Spectrum Health Research and Human Rights Committee may inspect your
medical records for informational purposes where appropriate and necessary via mail,
electronic data, FAX or in person. Spectrum Health Research and Human Rights
Committee will be acting as the Spectrum Health’s Institutional Review Board and
Spectrum Health Hospital’s Privacy Board. Your privacy and confidentiality will be
preserved to the full extent required by law.

Participants will be identified on a data sheet by name and study identification (ID)
number only. All other forms (demographic sheet and questionnaires) will only have
this identification number. The clinic research nurse obtaining your consent will be
assigning you this ID number. The clinic research nurse will be the one maintaining the
participant list. None of the clinic nurses (including the research nurse), office staff,
doctors, other participants or parents will have access to the completed questionnaires.
The principal/ secondary investigator will collect the completed forms with only your ID
number on them.

If questionnaires are taken home or missing responses are found on your questionnaires,
the investigator will notify the clinic research nurse to contact you (possibly mailing you
a new form) in order to receive all completed forms. At the completion of the data
collection period, the secondary investigator and the clinic research nurse will determine
the eligibility and winners of the ra ffled gift certificates. Your name will not be revealed
in any reports or publications resulting from this study without your expressed consent.

113

HIPAA Authorization/Consent for Release of Health Information for Research
Purposes

As part of the above research study, you are being asked to allow the release of your
health information to the principal / secondary investigator and any of her
representatives assisting with this research study. The Health Insurance Portability and
Accountability Act (HIPAA) permits a hospital, or doctor’s office (also known as a
covered entities) to use or release Protected Health Information (PHI) for the purposes of
treatment, payment or Health Care Operations. All other uses and releases of health
information must be released by a HIPAA Authorization / consent. Authorization
expresses legal permission from an individual to use or release PHI for research
purposes. With limited exceptions, a covered entity may use or release PHI for research
purposes only where permission has been given for such use and / or release.

1. What will you do with this information and why am I being asked to release this
information?
This information will be collected and entered onto a database with the health
information from others taking part in this study, and studied in order to determine
if perceived parental support and different parenting styles affect adherence to
diabetic health management, metabolic control and perceived quality of life. The
HgbA1c from your medical record is needed to evaluate the metabolic control.

2. What are you asking me to release?
We will collect information about you needed to complete this research study. This
may include but may not be limited to your name and medical record number. For
this study, it will also include your recent HbAlc values. Your doctor, the study
investigator, or clinic research nurse may review your medical records for purposes
of obtaining the pertinent medical history information and HgbA1c values.

3. Who will see this information?
Spectrum Health and the study personnel may use or release your PHI for purposes
of the study to the following:
The principal and secondary investigators and supporting staff (clinic staff,
dissertation committee members, statistician).
The Spectrum Health Research and Human Rights Committee.
The Food and Drug Administration (FDA) and other governmental regulatory
agenc1es.

The Michigan State University Committee on Research Involving Human Subjects
(UCRIHS)

It is expected that only the research nurse, clinic nurses and doctors will see
your medical record. The secondary investigator may only see the medical record if
it becomes necessary to record the HbAlc values or review the record to assure
inclusion of subjects meeting the criteria of the study. The clinic research nurse will
maintain the list of participants, with names and ID numbers. The research nurse,
nursing staff, clinic doctors, parents or other participants will n_ot have access to the
completed surveys.

Your study records released outside of Spectrum Health will not personally
identify you. Other than the principal / secondary investigator, those listed above
may see parts of your medical records related to this study, but only identified by
the ID number. The information collected and sent to the investigator is the property
of the investigator, and you will not be able to get it back. In the event of any

114

publication regarding this study, your identity will not be released without your
expressed consent.

We recognize that some of those who receive protected health information may not
be required under federal regulations to keep your information confidential, so we
cannot guarantee that your information will not be released or made available to
another party once it leaves Spectrum Health. Therefore, we share this information

only if necessary and we use all reasonable efforts to request that those who receive
it take steps to protect your privacy.

Your access to your medical records will not be changed by the study. You have the
right to see and copy your PHI related to the research study as long as this
information is maintained by the study personnel or Spectrum Health.

4. Will the information you collect as part of this study be destroyed when it is no
longer needed?
Your information, including participant list with ID number, will be kept at least
until the study is completed and no longer needed, after which it will be carefully
and properly disposed of.

5. Can I stop my information from being used?
Yes, you can withdraw this authorization at any time. Once you cancel your
authorization, we will stop collecting your medical information. However, any
information that was collected and sent before you revoked your authorization will
continue to be used and be seen as described above. For example, study personnel
may need to use or release information obtained before you withdrew your
authorization in order to preserve the scientific integrity of the study.

While you may phone us and request to stop your participation in the research
study, to discontinue the collection of your protected health information for study
purposes, you must do so in writing.

If you decide to stop your participation in this study and stop the collection of your
health information as well, you must send a notice to: Dr. Boger or Sue Mlynarczyk,
C/O Cook Research Department, 100 Michigan, NE, MC38, Grand Rapids, MI 49503.

6. What if I do not authorize you to collect and release my health information?
If you decide not to authorize release of your health information as part of this study,
your decision will in no way affect your medical care or cause you to lose any
benefits to which you are entitled. Authorization to use or release your PHI is E.
addition to your consent to participate in this research study. However, you cannot

participate in this research study if you do not authorize the use or release of your
PHI.

7. How long will this Authorization last?
This authorization shall expire at the completion of the research project.

8. Will my health information be used for other purposes?
No

115

CONTACT PERSONS:

The principal and secondary investigator involved with the study, clinic doctors and

nursing staff are available to answer any questions you may have about this study. If

you have questions, contact Sue Mlynarczyk, secondary investigator at (616) 391-3050.

Should you have any questions regarding your rights as a participant, you may call:

0 Spectrum Health Research and Human Rights Committee Representative, Linda
Pool at 616-391-1291/1299.

0 Michigan State’s University Committee on Research Involving Human Subjects
(UCRIHS); Peter Vasilenko, PhD Chair at (517 655-2180). Michigan State University,
202 Olds Hall, East Lansing, MI, 48824-1047; Email: ucrihs@msu.edu

CONSENT

Adolescent Assent: By signing this consent form and returning the required surveys and
demographic sheet you are indicating your voluntary agreement to participate in this
study.

 

Printed Name of Adolescent

 

Signature of Adolescent Date

Parental Consent: By signing this consent form and HIPAA authorization, and initialing
each page, you certify you have read this form, you have had the opportunity to ask
questions about this study and this form, and you have received answers that fully
satisfy those questions. You are voluntarily signing this consent form and HIPAA
authorization as evidence of your decision to have your adolescent participate in this
study and you are giving authorization for release of all of your adolescent’s protected
health information relative to this research. You are aware you may withdraw your
consent and HIPAA Authorization at any time and your care will not suffer. You will
receive a signed copy of this Research Informed Consent and HIPAA Authorization.

 

 

 

 

 

 

/ /
Signature of Parent (or legal guardian) Date

/ 1
Signature of Person Obtaining Consent Date

/ /
Signature of Principal Investigator Date

116

Research Informed Consent and HIPAA Authorization/Consent for Release of
Health Information for Research Purposes

PARENTAL SUPPORT AND ADOLESCENT HEALTH MANAGEMENT OF
DIABETES

Principal Investigator: Dr. Robert Boger, Ph.D. Michigan State University
Secondary Investigator: Susan M. Mlynarczyk, RN. MSN. (Spectrum-health), Pth,
MSU

INT RODUCTION:

You are being asked to participate in a research study. In order to decide whether or not
you should agree to be part of this research study, you should receive enough
information about its risks and benefits to make a judgment. This process is called
informed consent.

This consent form gives detailed information about the research study, which will be
discussed with you. If you wish to participate in this study, you will be asked to sign
this form and you will be given a signed copy for your records.

NATURE AND PURPOSE OF THIS STUDY:

This study will explore the nature of support that enables the adolescent to most
effectively manage their diabetic health care. The overall purpose of this research is to
investigate varying degrees of parental support and how this may affect adolescents'
diabetic health management, metabolic control and perceived quality of life for Grand
Rapids area adolescents aged 12 to 18, diagnosed with insulin dependent diabetes.

You are being asked to volunteer for this study because you are between the ages of 12
and 18 years, have had insulin dependent diabetes for at least one year, reside with at
least one parent, speak and read English, have a diabetes treatment regimen that
includes insulin injections or use of the insulin pump, glucose monitoring, meal
planning and exercise; and do not have any diagnosed mental health issues.

This study will be conducted over the next three months with completion of data
analysis in December of 2005. A total of around 150 adolescents at Spectrum Health are
expected to participate in the study.

STUDY PROCEDURES:

Your participation is limited to the time it will take to fill out the demographic sheet and
the four survey instruments. Once this is completed, your participation is complete. If
you should run out of time to complete the questionnaires, you will be given a stamped
addressed envelope in which to return your completed questionnaires at your earliest
convenience.

It is expected that you will be able to complete the questionnaires while waiting for your
different appointments with clinic staff. It should take approximately 20 to 25 minutes to
complete all four questionnaires and the demographic sheet. When available a quiet
room will be provided for you to fill out the questionnaires in private.

All adolescents meeting the criteria will be invited to participate in this study during the
designated time frame until approximately 150 adolescents are selected.

117

RISKS. INCONVENIENCES AND DISCOMFORTS:

As this study mainly involves your responses to questionnaires, there is minimal risk
involved. Any inconveniences incurred may be related to the time it takes to answer the
questionnaires. For any questionnaires taken home, reminder cards / calls may follow to
encourage completion and return of surveys.

POTENTIAL BENEFITS:

You may not directly benefit from your participation in this study. However, your
participation may contribute to further understanding the social factors affecting the
management of diabetes for adolescents. Participating in this study may result in no
benefit to you.

COSTS/PAYMENT FOR STUDY PARTICIPATION:
There is no cost to you for participating in this study. The research investigators will
cover any potential costs related to questionnaires being returned by mail.

Payment: Subjects completing the questionnaires will be mailed a $10 check for their
participation. Additionally, each participant will be entered into a raffle drawing where
$50 gift certificates will be given to four different individuals.

VOLUNTARY PARTICIPATION:

Participation in this research study is voluntary and you may refuse to enter the study or
may discontinue participation in the study at any time without jeopardizing present and
future medical care and treatment to which you are entitled. You will be informed of
any changes in the nature of the study or in the procedures, which may be related to
your willingness to continue participation in the study.

CONFIDENTIALITY:

The investigators, the clinic staff, delegated representatives from Spectrum Health,
and/ or the Spectrum Health Research and Human Rights Committee may inspect your
medical records for informational purposes where appropriate and necessary via mail,
electronic data, FAX or in person. Spectrum Health Research and Human Rights
Committee will be acting as the Spectrum Health’s Institutional Review Board and
Spectrum Health Hospital's Privacy Board. Your privacy and confidentiality will be
preserved to the full extent required by law.

Participants will be identified on a data sheet by name and study identification (ID)
number only. All other forms (demographic sheet and questionnaires) will only have
this identification number. The clinic research nurse obtaining your consent will be
assigning you this ID number. The clinic research nurse will be the one maintaining the
participant list. None of the clinic nurses (including the research nurse), office staff,
doctors, other participants or parents will have access to the completed questionnaires.
The principal/ secondary investigator will collect the completed forms with only your ID
number on them.

If questionnaires are taken home or missing responses are found on your questionnaires,
the investigator will notify the clinic research nurse to contact you (possibly mailing you
a new form) in order to receive all completed forms. At the completion of the data
collection period, the secondary investigator and the clinic research nurse will determine
the eligibility and winners of the raffled gift certificates. Your name will not be revealed
in any reports or publications resulting from this study without your expressed consent.

118

HIPAA Authorization/Cogent for Release of Health Informflon for Research
Purposes

As part of the above research study, you are being asked to allow the release of your
health information to the principal/ secondary investigator and any of her
representatives assisting with this research study. The Health Insurance Portability and
Accountability Act (HIPAA) permits a hospital, or doctor’s office (also known as a
covered entities) to use or release Protected Health Information (PHI) for the purposes of
treatment, payment or Health Care Operations. All other uses and releases of health
information must be released by a HIPAA Authorization / consent. Authorization
expresses legal permission from an individual to use or release PHI for research
purposes. With limited exceptions, a covered entity may use or release PHI for research
purposes only where permission has been given for such use and / or release.

1. What will you do with this information and why am I being asked to release this
information?
This information will be collected and entered onto a database with the health
information from others taking part in this study, and studied in order to determine
if perceived parental support and different parenting styles affect adherence to
diabetic health management, metabolic control and perceived quality of life. The
HgbA1c from your medical record is needed to evaluate the metabolic control.

2. What are you asking me to release?

We will collect information about you needed to complete this research study. This
may include but may not be limited to your name and medical record number. For
this study, it will also include your recent HbAlc values. Your doctor, the study
investigator, or clinic research nurse may review your medical records for purposes
of obtaining the pertinent medical history information and HgbA1c values.

3. Who will see this information?
Spectrum Health and the study personnel may use or release your PHI for purposes
of the study to the following:
The principal and secondary investigators and supporting staff (clinic staff,
dissertation committee members, statistician).
The Spectrum Health Research and Human Rights Committee.
The Food and Drug Administration (FDA) and other governmental regulatory
agenc1es.

The Michigan State University Committee on Research Involving Human Subjects
(UCRIHS)

It is expected that only the research nurse, clinic nurses and doctors will see
your medical record. The secondary investigator may only see the medical record if
it becomes necessary to record the HbAlc values or review the record to assure
inclusion of subjects meeting the criteria of the study. The clinic research nurse will
maintain the list of participants, with names and ID numbers. The research nurse,
nursing staff, clinic doctors, parents or other participants will go_t have access to the
completed surveys.

Your study records released outside of Spectrum Health will not personally
identify you. Other than the principal/ secondary investigator, those listed above
may see parts of your medical records related to this study, but only identified by
the ID number. The information collected and sent to the investigator is the property
of the investigator, and you will not be able to get it back. In the event of any

119

publication regarding this study, your identity will not be released without your
expressed consent.

We recognize that some of those who receive protected health information may not
be required under federal regulations to keep your information confidential, so we
cannot guarantee that your information will not be released or made available to

another party once it leaves Spectrum Health. Therefore, we share this information

only if necessary and we use all reasonable efforts to request that those who receive
it take steps to protect your privacy.

Your access to your medical records will not be changed by the study. You have the
right to see and copy your PHI related to the research study as long as this
information is maintained by the study personnel or Spectrum Health.

4. Will the information you collect as part of this study be destroyed when it is no
longer needed?
Your information, including participant list with ID number, will be kept at least

until the study is completed and no longer needed, after which it will be carefully
and pr0perly disposed of.

 

5. Can I stop my information from being used?
Yes, you can withdraw this authorization at any time. Once you cancel your
authorization, we will stop collecting your medical information. However, any
information that was collected and sent before you revoked your authorization will
continue to be used and be seen as described above. For example, study personnel
may need to use or release information obtained before you withdrew your
authorization in order to preserve the scientific integrity of the study.

While you may phone us and request to stop your participation in the research
study, to discontinue the collection of your protected health information for study
purposes, you must do so in writing.

If you decide to stop your participation in this study and stop the collection of your
health information as well, you must send a notice to: Dr. Boger or Sue Mlynarczyk,
C/O Cook Research Department, 100 Michigan, NE, MC38, Grand Rapids, MI 49503.

6. What if I do not authorize you to collect and release my health information?
If you decide not to authorize release of your health information as part of this study,
your decision will in no way affect your medical care or cause you to lose any
benefits to which you are entitled. Authorization to use or release your PHI is i_n_
addition to your consent to participate in this research study. However, you cannot

participate in this research study if you do not authorize the use or release of your
PHI.

 

7. How long will this Authorization last?
This authorization shall expire at the completion of the research project.

8. Will my health information be used for other purposes?
No

120

CONTACT PERSONS:

The principal and secondary investigator involved with the study, clinic doctors and

nursing staff are available to answer any questions you may have about this study. If

you have questions, contact Sue Mlynarczyk, secondary investigator at ( 616) 391-3050.

Should you have any questions regarding your rights as a participant, you may call:

° Spectrum Health Research and Human Rights Committee Representative, Linda
Pool at 616-391-1291/ 1299.

° Michigan State's University Committee on Research Involving Human Subjects
(UCRIHS); Peter Vasilenko, PhD Chair at (517 -355-2180). Michigan State University,
202 Olds Hall, East Lansing, MI, 48824-1047; Email: ucrihs@msu.edu

ADULT CONSENT

By signing this consent form and HIPAA authorization, and initialing each page, you
certify you have read this form, you have had the opportunity to ask questions about
this study and this form, and you have received answers that fully satisfy those
questions. You are voluntarily signing this consent form and HIPAA authorization as
evidence of your decision to participate in this study and you are giving authorization
for release of all of your protected health information relative to this research. You are
aware you may withdraw your consent and HIPAA Authorization at any time and your
care will not suffer. You will receive a signed copy of this Research Informed Consent
and HIPAA Authorization.

 

 

 

 

 

 

/ /
Signature of Adult Date

/ /
Signature of Person Obtaining Consent Date

/ /
Signature of Principal Investigator Date

121

APPENDIX H

UNIVERSITY COMMITTEE ON RESEARCH INVOLVING HUMAN SUBJECTS

APPROVAL LETTERS

122

 

OFFICE or
RESEARCH
ETHICS AND
STANDARDS

University Committee on
Research Involving
Human Subjects

Michigan State University
202 Olds Hall

East Lansing. MI

48824

517/355-2180
FAX15l7/432-4503

Web
www hurnanresearchmsiuedu
E Mail; ucrihs@msu.edu

MICHIGAN STATE Initial IRB
U N l V E R S I T Y Application

Approval

 

April 20. 2005

T01 Robert Boger
3d Human Ecology

Re: IRB it 05-237 Category: EXPEDITED 1-4. 2-5. 27
Approval Date: April 18, 2005
Expiration Date: April 17, 2006

Title: PARENTAL SUPPORT AND ADOLESCENT HEALTH MANAGEMENT OF DIABETES

The University Committee on Research Involving Human Subjects (UCRIHS) has completed their review of
your project. I am pleased to advise you that your project has been approved.

The committee has found that your research project is appropriate in design. protects the rights and welfare of
human subjects, and meets the requirements of MSU's Federal Wide Assurance and the Federal Guidelines
(45 CFR 46 and 21 CF R Part 50). The protection of human subjects in research is a partnership between the
IRS and the investigators. We look forward to working with you as we both fulfill our responsibilities.

Renewals; UCRIHS approval is valid until the expiration date listed above. If you are continuing your project.
you must submit an Application for Renewal application at least one month before expiration. II the project is
completed, please submit an Application for Permanent Closure.

Revisions: UCRIHS must review any changes in the project. prior to initiation of the change. Please submit an
Application for Revision to have your changes reviewed. It changes are made at the time of renewal. please
include an Application for Revision with the renewal application.

Problems: It issues should arise during the conduct of the research. such as unanticipated problems. adverse
events. or any problem that may increase the risk to the human subjects. notify UCRIHS promptly. Forms are
available to report these issues.

Please use the IRB number listed above on any forms submitted which relate to this project. or on any
correspondence with UCRIHS.

Good luck in your research. II we can be of further assistance, please contact us at 517-355-2180 or via email
at UCRIHS@msu.edu. Thank you tor your cooperation.

Sincerely,

Peter Vasilenko, PhD.
UCRIHS Chair

CI Sue Mlynarczyk
516 Greenbrier SE
Grand Rapids. MI 49546

123

 

OFFICE OF
RESEARCH
ETHICS AND
STANDARDS

University Committee on
Research Involving
Human Subjects

Michigan State University
70? Olds Halt

East Lansmg, MI

48824

517/355-2180
FAX- 517/432-4503
Web

vrww humanreseaich msu edu
t—Mail ucrihs@msu.edu

MICHIGAN STATE Revision
11 N l v E R s | T Y Application

May 1, 2005 Approval

 

T0? Robert BOGER
30 Human Ecology

Re: IRB ll 05-237 Category: EXPEDITED 1-4, 2-5. 2-7
Revision Approval Date: May 1, 2005
Project Expiration Date: April 17, 2006

Title: PARENTAL SUPPORT AND ADOLESCENT HEALTH MANAGEMENT OF DIABETES

The University Committee on Research Involving Human Subjects (UCRIHS) has completed their review of
your project. I am pleased to advise you that the revision has been approved.

Revision to include a change to the instruments. consent and subject incentive. The new consent document is
to replace the current one. Second Investigator Sue Mlynarczyk (mlynarcs@gvsu.edu).

The review by the committee has found that your revision is consistent with the continued protection of the
rights and welfare of human subjects. and meets the requirements of MSU's Federal Wide Assurance and the
Federal Guidelines (45 CFR 46 and 21 CFR Part 50). The protection of human subjects in research is a
partnership between the IRS and the investigators. We look forward to working with you as we both fulfill our
responsibilities.

Renewals: UCRIHS approval is valid until the expiration date listed above. If you are continuing your project.
you must submit an Application for Renewal application at least one month before expiration. If the project is
completed, please submit an Application for Permanent Closure.

Revisions: UCRIHS must review any changes in the project, prior to initiation of the change. Please submit an
Application for Revision to have your changes reviewed. It changes are made at the time of renewal, please
include an Application for Revision with the renewal application.

Problems: If issues should arise during the conduct of the research. such as unanticipated problems. adverse
events. or any problem that may increase the risk to the human subjects, notify UCRIHS promptly. Forms are
available to report these issues. 3

Please use the IRB number listed above on any forms submitted which relate to this project. or on any
correspondence with UCRIHS.

Good luck in your research. If we can be of further assistance. please contact us at 517-355-2180 or via email
at UCRIHS@msu.edu. Thank you for your cooperation.

Sincerely.
W3

Peter Vasilenko, PhD.
UCRIHS Chair

c: Sire Mlynarczyk
516 Greenbrier SE
Grand Rapids. MI 49546 124

 

OFFICE OF
RESEARCH
ETHICS AND
STANDARDS

University Committee on
Research Involving
Human Subjects

Michigan State University
202 Olds Hall

East Lansing. MI

48824

517/355-2180
FAX. 517/432-4503

Wet)
vwvw humanresearch m5u edu
E—Mail; ucrihs@msu edu

Ilcll .9 an sh nun! ..- ~rl./\n

Revision
Application
Approval

MICHIGAN STATE

UNIVERSITY

 

August 22, 2005

To: Robert BOGER
30 Human Ecology

Category: EXPEDITED 1-4, 2-5, 2-7
August 19, 2005
April 17. 2006

Re: IRB it 05-237
Revision Approval Date:
Project Expiration Date:

Title: PARENTAL SUPPORT AND ADOLESCENT HEALTH MANAGEMENT OF DIABETES

The University Committee on Research Involving Human Subjects (UCRIHS) has completed their review of
your project. I am pleased to advise you that the revision has been approved.

Revision to include a change to the consent. The new consent document is an addition to the current one.

The review by the committee has found that your revision is consistent with the continued protection of the
rights and welfare of human subjects. and meets the requirements of MSU's Federal Wide Assurance and the
Federal Guidelines (45 CF R 46 and 21 CF R Part 50). The protection of human subjects in research is a
partnership between the IRS and the investigators. We look forward to working with you as we both fulfill our
responsibilities.

Renewals: UCRIHS approval is valid until the expiration date listed above. If you are continuing your project,
you must submit an Application for Renewal application at least one month before expiration. If the project
is completed. please submit an Application for Permanent Closure.

Revisions: UCRIHS must review any changes in the project, prior to initiation of the change. Please submit
an Application for Revision to have your changes reviewed. If changes are made at the time of renewal,
please include an Application for Revision with the renewal application.

Problems: If issues should arise during the conduct of the research, such as unanticipated problems.
adverse events. or any problem that may increase the risk to the human subjects, notify UCRIHS promptly.
Forms are available to report these issues.

Please use the IRB number listed above on any forms submitted which relate to this project, or on any
correspondence with UCRIHS.

Good luck in your research. If we can be of further assistance, please contact us at 517-355-2180 or via
email at UCRIHS@msu.edu. Thank you for your cooperation.

Sincerely,
Mg

Peter VaSilenko, Ph.D.
UCRIHS Chair

Sue Mlynarczyk
516 Greenbrier SE
Grand Rapids. MI 49546

125

T

OFFICE OF
REGULATORY
AFFAIRS

Human Research
Protection Programs

BIOMEUCAL & HEALTH
INSTITUTIONAL REVIEW
BOARD (BIRD)

COMMUNITY RESEARCH
INSTITUTIONAL REVIEW
BOARD (CRIRB)

socw. SCIENCE]
BEHAVIORAL l eoucmori
INSTITUTIONAL REVIEW
BOARD isms)

202 Olds Hall

East Lansing, Michigan
48824-1046
Sl7.355-2180

Fax: 517432-4503

vww humanresearchmsuedu
SIRE & BIRB: lRBQmsu edu
CRlRB: crirb©msuedu

 

MSU u an aflirmntivr-acnon
eqrmI-oppormmn institution

 

MICHIGAN STATE

UNIVERSITY

Renewal
Application
Approval

April 17, 2006

T01 Robert BOGER
30 Human Ecology

Category: EXPEDITED 2-5. 2-7
April 15, 2006
April 14, 2007

Re: IRB # 05-237
I Renewal Approval Date:
Project Expiration Date:

Title: PARENTAL SUPPORT AND ADOLESCENT HEALTH MANAGEMENT OF DIABETES

The Institutional Review Board has completed their review of your project. I am pleased to advise you that the
renewal has been approved.

The review by the committee has found that your renewal is consistent with the continued protection of the
rights and welfare of human subjects. and meets the requirements of MSU's Federal Wide Assurance and the
Federal Guidelines (45 CFR 46 and 21 CFR Part 50). The protection of human subjects in research is a
partnership between the lRB and the investigators. We look forward to working with you as we both fulfill our
responsibilities. ~

Renewals: IRB approval is valid until the expiration date listed above. If you are continuing your project. you
must submit an Application for Renewal application at least one month before expiration. If the project is
completed. please submit an Application for Permanent Closure.

Revisions: The IRB must review any changes in the project. prior to initiation of the change. Please submit an
Application for Revision to have your changes reviewed. If changes are made at the time of renewal, please
include an Application for Revision with the renewal application.

Problems: it issues should arise during the conduct of the research. such as unanticipated problems. adverse
events, or any problem that may increase the risk to the human subjects, notify the IRB office promptly. Forms
are available to report these issues.

Please use the IRB number listed above on any forms submitted which relate to this project, or on any
correspondence with the IRB office.

Good luck in your research. If we can be of further assistance, please contact us at 517-355—2180 or via email
at lRB@msu.edu. Thank you for your cooperation.

Sincerely,

yea/we“:

Peter Vasilenko, PhD.
SIRB Chair

c: Sue Mlynarczyk
516 Greenbrier SE
Grand Rapids, MI 49546

126

APPENDIX I

SPECTRUM HEALTH RESEARCH AND HUMAN RIGHTS COMMITTEE

APPROVAL LETTERS

127

E Spectrum Health

BUTTERWORTH CAMPUS

 

100 Michigan Street NE Grand Rapids MI 4950342560
616 391 1774 fax 391 2745

May 2 , 2005

Susan Mlynarczyk RN
516 Greenbriar Dr. SE
Grand Rapids, MI 49546

Dear Ms. Mlynarczyk:

By means of the expedited review process your project “Parental Suppon and Adolescent Health
Management of Diabetes", protocol dated 05/02/05, informed consent form dated 03/1 1/05, was given
approval by the Spectrum Health Research and Human Rights Committee.

Your approval period is from 05/02/2005 to 05/02/2006. The Spectrum Health number assigned to your
study is 2005-090. Please use this number as a reference in all correspondence to the research office
regarding your study.

Any changes made to the study, including informed consent changes, following this approval require
submission in writing to the IRB and approval by the committee. Changes may not be implemented until
approved by the lRB. Approval of your research means you are responsible for complying with all
policies and procedures ofthe FDA. OHRP. HIPAA. Spectrum Health Hospitals. and the Spectrum
Health Research & Human Rights Committee.

The FDA and this committee require you submit in writing a progress report to the committee by
04/01/2006. Your study cannot continue after 05/02/2006 until re-approyed by the Spectrum Health
Research and Human Rights Committee. You will need to apply for re-approval 4-6 weeks prior to that
time ifyour study continues to be ongoing and’or patients continue to be followed. even ifthe study has
closed to patient accrual. You must complete a sludx closeout form ifyour study has been completed.
terminated. or if you are not rt‘iiC“ ing the study.

lfyou have any questions about the terms ofthis approval please phone m_\ sclfor Tiffany \r’anTilburg at
6|6-39l-l299.

Sincerely.
Jeffrey Jones MD

Chairman. Spectrum Health Research and Human Rights Committee

151 \gb
(1 file

128

% Spectrum Health

 

 

 

100 Michigan Street NE Grand Rapids Ml 439503-2560

September 6. 2005

Susan Mlynarczyk
516 Greenbriar Dr SE
Grand Rapids, MI 49546

Dear Ms. Mlynarczyk:

By means of the expedited review process the informed consent form for adult patients (dated 07/28/05)
for your project “Parental Support and Adolescent Health Management of Diabetes”, was given approval
by the Spectrum Health Research and Human Rights Committee.

The Spectrum Health number assigned to your study is 2005—090. Please use this number as a reference in
all correspondence to the research office regarding your study.

Any changes made to the study. including informed consent changes, following this approval require
submission in writing to the [RB and approval by the committee. Changes may not be implemented until
approved by the IRB. Approval of your research means you are responsible for complying with all
policies and procedures of the FDA. OHRP. HIPAA, Spectrum Health Hospitals, and the Spectrum
Health Research & Human Rights Committee.

The FDA and this committee. require you submit in writing a progress report to the committee by
04/01/2006. Your study cannot continue after 05/02/2006 until re-approved by the Spectrum Health
Research and Human Rights Committee. You will need to apply for re~approval 4—6 weeks prior to that
time if your study continues to be ongoing and/or patients continue to be followed, even if the study has
closed to patient accrual. You must complete a study closeout form if your study has been completed,
terminated, or if you are not renewing the study.

If you have any questions about the terms of this approval please phone myself or Tiffany VanTilburg at
616391-1299-

Sincerely.

   

y Jones MD
C airman. Spectrum Health Research and Human Rights Committee

JSJ/vgb
c: file

129

 

v

El

Spectrum Health

 

 

 

Butterworth Campus
100 MICHIGAN STREET NE GRAND RAPlDS MI 49503-2560
616 391 1774 FAX 391 2745 wwmspectrum-healthprg

April 22,2005

Sue Mylnarczyk
516 Greenbrier Drive SE
Grand Rapids, MI 49546

Dear Sue,

The Nursing Research Committee has completed the review of your research
proposal, ”Parental Support and Adolescent Health Management of Diabetes " at the
April 19, 2005 committee meeting. I am pleased to inform you that your proposal has
received approval pending receipt of the approval letter from Michigan State University.

Once your letter is received, you will be ready to proceed to the Hospital
Research and Human Subjects Committee. Linda Pool has been provided with a copy of
your proposal. She can be contacted at (391-1291) for arrangements related to the
Hospital Research and Human Subjects Committee.

As per Nursing Research Committee policy, you will be assigned a sponsor who
will serve as a resource to you during this study. I am happy to personally serve in that
capacity. Please contact me at 391-2676 when you are ready to begin data collection, and
keep me informed of your progress during the study.

Upon completion of your research study, we will look forward to an oral and /or
poster presentation in a format apprOpriate to the topic and in timing with other
educational offerings. We also encourage you to present your findings via conference

presentations and publication.

Please feel free to call me if you have any questions or need further Clarification.
1 can be reached at 391-2676.

Sincerely.

W g'id
Jan Hodges, ' N, RN

Chair. Nursing Research Committee

C: Linda Pool

130

 

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131

 

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