Adults Living With Type 2 Diabetes

282 Pages·2015·4.04 MB·English

by  Melinda Whetstone

Florida State University Libraries
Electronic Theses, Treatises and Dissertations The Graduate School
2013
Adults Living with Type 2 Diabetes: Kept
Personal Health Information Items as
Expressions of Need
Melinda Whetstone
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FLORIDA STATE UNIVERSITY

COLLEGE OF COMMUNICATION AND INFORMATION

ADULTS LIVING WITH TYPE 2 DIABETES:
KEPT PERSONAL HEALTH INFORMATION ITEMS
AS EXPRESSIONS OF NEED

By

MELINDA WHETSTONE

A Dissertation submitted to the
School of Library and Information Studies
in partial fulfillment of the
requirements for the degree of
Doctor of Philosophy

Degree Awarded:
Summer Semester, 2013

Copyright © 2013
Melinda R. Whetstone
All Rights Reserved
Melinda R. Whetstone defended this dissertation on April 25, 2013.
The members of the supervisory committee were:

Melissa Gross
Professor Directing Dissertation

Ron Goldsmith
University Representative

Gary Burnett
Committee Member

Mia Liza Lustria
Committee Member

The Graduate School has verified and approved the above-named committee members, and
certifies that the dissertation has been approved in accordance with university requirements.

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I dedicate this dissertation to my wonderful husband, Jim Combs,
and my amazing children, Collin and Carson.

Boys, I regret that this effort stole me away from being with you
at the soccer field, swimming pool, campgrounds, etc. I treasured the moments we did share,
such as bedtime rituals and vacations, that much more.

I was always renewed by your bedtime hugs and smiles,
or your morning sleepy heads. Our rides into school each morning, although sometimes
challenging, often gave me the smile I needed to do what needed to be done.

I look forward to encouraging you as you grow,
as I was able to do in my program.

For my loving husband, this has been a Herculean effort on many fronts.
Thank you for staying strong through the struggles.

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ACKNOWLEDGEMENTS
First, I would like to thank members of the faculty and staff at Florida State University
who assisted, mentored, and encouraged me during my years as a doctoral student. I am
especially grateful to my dissertation advisor, Dr. Melissa Gross, for her continuous faith in me
and her ability to push me to a higher level of achievement than I often thought possible. I am
greatly indebted to Dr. Gary Burnett and Dr. Ron Goldsmith for providing gentle guidance and
correction when my arguments and logic could benefit from additional consideration and Dr.
Mia Lustria for sharing her knowledge to successfully coordinate with Tallahassee Memorial
Hospital. I also thank Ebe Randeree for convincing me to pursue the doctoral program and for
his near endless supplies of coffee and support, and my fellow doctoral students who were
always there when I needed encouragement or grounding.
I would also like to acknowledge the unending support of my friends and family. First, I
want to thank my parents, Merle and Romaine Whetstone, for providing infinite childcare and
household management so I could focus on my studies. Additionally, I am eternally grateful for
the value you instilled in education; any success that I have achieved is greatly due to my strong
foundation. I also extend much gratitude to my Aunt Jan and Uncle Dick who provided partial
inspiration for this study through life lessons of living with diabetes. Your guidance and living
example are a testament to the importance of knowledge and diabetes education. Finally, I am
very grateful to my husband, Jim Combs, and sons, Collin and Carson, for their support and their
generous gift of time that was needed to complete this work.
I also thank the diabetes educators I met and spoke with during the recruitment process.
They generously coordinated with me and offered supportive introductions that likely greatly
assisted recruitment. More importantly, they shared with me insights into diabetes education.
Through our conversations I acquired a broader understanding of the context of diabetes,
treatment, and outcomes.
Last but not least, I gratefully acknowledge the Dissertation Research Grant from Florida
State University.

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TABLE OF CONTENTS
List of Tables .................................................................................................................................. x
List of Figures ............................................................................................................................... xii
Abstract ........................................................................................................................................ xiii
1. INTRODUCTION ...................................................................................................................... 1
1.1 Background ............................................................................................................................ 4
1.2 Terms Defined ....................................................................................................................... 8
1.2.1 Context ........................................................................................................................... 8
1.2.2 Kept (Personal) Health Information Item ....................................................................... 9
1.2.3 Information Need............................................................................................................ 9
1.2.4 Situational Relevance ................................................................................................... 10
1.3 Problem Context .................................................................................................................. 11
1.4 Statement of Problem........................................................................................................... 14
1.5 Significance of Problem....................................................................................................... 17
1.6 Research Questions .............................................................................................................. 19
1.7 Method ................................................................................................................................. 20
1.8 Conclusion ........................................................................................................................... 20
2. BACKGROUND LITERATURE ............................................................................................. 22
2.1 Personal Information Management ...................................................................................... 22
2.1.1 Information Needs and Uses ........................................................................................ 23
2.1.2 Personal Information Keeping and the Collection ....................................................... 26
2.2 PIM in Context of Health Focus: Personal Health Information Management (PHIM) .. 29
2.2.1 The Study’s PHIM Context within the American Health Care System ....................... 32
2.3 The Population: Adults with Type 2 Diabetes in their Homes ............................................ 33
2.3.1 Self-management and Perspectives of Individuals Diagnosed with Type 2 Diabetes . 35
2.3.2 Barriers and Effective Strategies for Self-Management/ Diabetes Education ............. 38
2.3.3 Information Needs Relevant to Health and Diabetes ................................................... 39
2.3.4 Information Technology Tools and Systems in Use with Diabetes ............................. 42
2.4 Relevance ............................................................................................................................. 43
2.4.1 Physical versus Cognitive............................................................................................. 45
2.4.2 Classification of Relevance .......................................................................................... 46
2.4.3 Physical View of Relevance: System-centered ............................................................ 48
2.4.4 Cognitive View of Relevance: User-centered .............................................................. 50
2.4.5 Situational Relevance and Recent User-Centered Research ........................................ 51
2.4.6 Conclusion to Relevance: Use of Situational Relevance to Inform this Study ............ 54
2.5 Information Need ................................................................................................................. 56
2.6 The Naturalistic Paradigm ................................................................................................... 57
2.7 Conclusion ........................................................................................................................... 59
3.RESEARCH DESIGN ............................................................................................................... 61
3.1 The Research Questions....................................................................................................... 61
3.2 Pre-Test ................................................................................................................................ 62
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3.2.1 Pre-test Methods ........................................................................................................... 63
3.2.2 Changes Made Following the Pre-test .......................................................................... 65
3.3 Study Data Collection Methods ........................................................................................... 66
3.3.1 Recruitment .................................................................................................................. 66
3.3.1.1 The recruitment site: Description of the diabetes education classes ................... 70
3.3.2 The Study Participants .................................................................................................. 72
3.3.3 Data Collection: The Interviews ................................................................................... 73
3.4 Ethical Considerations ......................................................................................................... 77
3.4.1 Voluntary Participation ................................................................................................ 77
3.4.2 Communication of Study’s Purpose and Benefits of Participation .............................. 78
3.4.2.1 Study’s Purpose ................................................................................................... 78
3.4.2.2 Benefits ................................................................................................................ 79
3.4.3 Subject Well-being: also known as Unanticipated Harm ............................................. 79
3.4.3.1 Risk Mitigation .................................................................................................... 80
3.4.4 Privacy and Confidentiality .......................................................................................... 80
3.4.4.1 Privacy ................................................................................................................. 80
3.4.4.2 Confidentiality ..................................................................................................... 81
3.4.4.3 Protected Health Information and HIPAA .......................................................... 81
3.5 Data Analysis ....................................................................................................................... 82
3.5.1 Operationalization of Observations of Interest............................................................. 83
3.5.1.1 Context ................................................................................................................ 83
3.5.1.2 Kept health information item............................................................................... 84
3.5.1.3 Information need ................................................................................................. 84
3.5.1.4 Situational relevance ........................................................................................... 85
3.5.2 Addressing the Research Questions ............................................................................. 86
3.6 Evaluating Study’s Quality: Credibility, Reliability, Validity, and Other Measures .......... 88
3.6.1 Credibility and Other Measures.................................................................................... 88
3.6.2 Reliability ..................................................................................................................... 89
3.6.3 Validity ......................................................................................................................... 90
3.7 Limitations and Assumptions .............................................................................................. 92
3.7.1 Assumptions ................................................................................................................. 92
3.7.2 Limitations .................................................................................................................... 93
3.8 Schedule & Budget .............................................................................................................. 94
3.9 Conclusion ........................................................................................................................... 96
4. RESULTS ................................................................................................................................. 98
4.1 The Sample and the Interviews ............................................................................................ 98
4.2 The Research Questions..................................................................................................... 105
4.3 Kept Personal Health Items (RQ1) .................................................................................... 105
4.3.1 Ancillary Findings with Regard to Kept Personal Health Information Items ............ 112
4.3.1.1 Source ................................................................................................................ 113
4.3.1.2 Usefulness.......................................................................................................... 114
4.3.1.3 Kept items not used ........................................................................................... 115
4.4 The Role of Personal Context (RQ2) ................................................................................. 116
4.4.1 Context with Regards to Gender, Age, Diagnosis Duration, and Health Status ........ 117
4.4.2 Themes of Personal Context ....................................................................................... 119
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4.4.2.1 Activity .............................................................................................................. 119
4.4.2.2 Adjustment ........................................................................................................ 121
4.4.2.3 Living with diabetes: Challenge ........................................................................ 123
4.4.2.4 Emotion ............................................................................................................. 125
4.5 Use of Kept Personal Health Items (RQ3)......................................................................... 130
4.5.1 Use: Got Pictures, Ideas, Understandings .................................................................. 132
4.5.2 To Monitor.................................................................................................................. 135
4.5.3 To Plan........................................................................................................................ 137
4.5.4 Got Started, Got Motivated ........................................................................................ 137
4.5.5 Gain Skill .................................................................................................................... 138
4.5.6 Got Control ................................................................................................................. 139
4.5.7 Example of Get Connected: Use of Handout Available to All, But “Used” Once .... 140
4.6 Information Needs Associated with Kept Personal Health Items (RQ4) .......................... 141
4.6.1 Nutrition ..................................................................................................................... 142
4.6.2 Living and Managing ................................................................................................. 145
4.6.3 Healthy Behaviors ...................................................................................................... 148
4.6.4 Overview and Facts .................................................................................................... 149
4.6.5 Treatment Options and Care ....................................................................................... 152
4.7 Relevance of Kept Health Information Items to Living with Diabetes (RQ5) .................. 153
4.7.1 Information Needs Relative to Current Diabetes Education Categories .................... 153
4.7.2 Kept Health Information Items and Situational Relevance ........................................ 156
4.7.2.1 The case of Arlene: Few kept items and high information seeking .................. 157
4.7.2.2 The case of Renee, recipe keeper extraordinaire: Continuously seeking recipes to
achieve successful diabetes management .......................................................... 158
4.7.2.3 The case of June: Many cookbooks show struggle to connect identity as Jewish
and diabetic ........................................................................................................ 159
4.7.2.4 The case of Janice: Keep life simple and use limited resources to manage life
with diabetes ...................................................................................................... 160
4.7.2.5 The case of Alan: Kept health information items chosen by others, but depict his
information need for “credible” general information ........................................ 161
4.7.3 Information Needs and Item Uses Considered within Framework of National Diabetes
Education Standards ................................................................................................... 163
4.7.4 Information Needs Portrayed by the Kept Items ........................................................ 166
4.7.4.1 Cookbooks for nutrition, as well as psychosocial information needs ............... 167
4.7.4.2 Recipes for nutrition, as well as psychosocial information needs ..................... 167
4.7.4.3 Nutrition management books for nutrition, as well as personal strategy
information needs .............................................................................................. 168
4.8 Conclusions ........................................................................................................................ 168
5. DISCUSSION ......................................................................................................................... 170
5.1 Review of the Research Questions and Analysis............................................................... 170
5.2 The Participants: As a Reflection of the Population with Type 2 Diabetes ...................... 171
5.3 Key Findings ...................................................................................................................... 173
5.3.1 The Items within the context of Personal Information Collections ............................ 174
5.3.1.1 Online health information items ........................................................................ 177
5.3.1.2 Source of information items .............................................................................. 178
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5.3.1.3 Nature of information items: Active or passive ................................................ 179
5.3.2 Importance of Personal Context and Item Use ........................................................... 179
5.3.2.1 Activity .............................................................................................................. 180
5.3.2.2 Adjustment ........................................................................................................ 180
5.3.2.3 Challenge ........................................................................................................... 181
5.3.2.4 Emotion ............................................................................................................. 181
5.3.3 Item Types .................................................................................................................. 181
5.3.4 Item Usages ................................................................................................................ 182
5.3.5 Information Needs: Explicitly Stated or Expressed through Narratives .................... 183
5.3.5.1 Information needs expressed by narrative ......................................................... 184
5.3.5.2 Possible explanations for prevalence of nutrition-related items ........................ 185
5.4 Implications for Theory ..................................................................................................... 186
5.4.1 Imposed Query ........................................................................................................... 186
5.4.2 Information Encountering .......................................................................................... 188
5.4.3 Information Monitoring and Blunting ........................................................................ 189
5.5 Limitations of Study .......................................................................................................... 190
6. CONCLUSION ....................................................................................................................... 193
6.1 Implications and Recommendations .................................................................................. 193
6.1.1 For Library and Information Professionals ................................................................ 193
6.1.1.1 Findings inform collection development for public libraries ............................ 194
6.1.1.2 Serendipity and diabetes related material .......................................................... 194
6.1.1.3 Metadata: New categories for item types .......................................................... 194
6.1.2 For Diabetes Educators............................................................................................... 195
6.1.3 For Developers of Personal Health Record Technology ............................................ 197
6.1.3.1 Resources beyond traditional patient education materials ................................ 198
6.1.3.2 Benefit of developing personal health technology using participatory design and
patients as informants ........................................................................................ 199
6.1.4 For Developers of Diabetes Education Curriculums and Technology other than
Personal Health Records ............................................................................................ 199
6.1.5 For Future Researchers ............................................................................................... 200
6.1.5.1 Recruitment ....................................................................................................... 201
6.1.5.2 Audio- or video- recording ................................................................................ 201
6.2 Contributions ..................................................................................................................... 202
6.2.1 Kept Items Primarily Paper-Based ............................................................................. 202
6.2.2 Expanded Taxonomies for Health Information Item Type and Item Use .................. 203
6.2.3 Situational Relevance Provides Insight into Kept Items Expressions of Information
Needs .......................................................................................................................... 203
6.4 Future Research Directions ................................................................................................ 203
6.4.1 Purposive Sample to include Individuals with Various Diagnosis Durations ............ 204
6.4.2 Purposive Sample to include Individuals without Diabetes Class Experience .......... 204
6.4.3 Large Scale Survey ..................................................................................................... 205
6.4.4 Health Literacy ........................................................................................................... 205
6.4.5 Co-occurring Morbidities ........................................................................................... 206
6.4.6 Effect of Information Item Advocacy during Diabetes Education Classes ................ 206
6.5 Conclusions ........................................................................................................................ 207
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APPENDICES ............................................................................................................................ 210
A. RECRUITMENT FLYER & SIGN-UP SHEET .....................................................................210
B. LETTER OF INTRODUCTION. ............................................................................................212
C. BEHAVIORAL INFORMED CONSENT FORM APPROVED BY FSU AND
TALLAHASSEE MEMORIAL HOSPITAL. .........................................................................213
D. APPROVED STUDY PROTOCOL POST PRE-TEST MODIFICATION ...........................217
E. CODING SHEETS ..................................................................................................................230
F. DIABETES CLASS INFORMATIONAL PACKET: THE ITEMS ......................................241
G. THE PARTICIPANTS ............................................................................................................243
H. KEPT HEALTH INFORMATION ITEMS FOUND IN HOMES .........................................245
I. TABLE OF ACRONYMS ......................................................................................................248
REFERENCES ........................................................................................................................... 250
BIOGRAPHICAL SKETCH ...................................................................................................... 268

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