Assessing Perceptions of Hydroxyurea among Sickle Cell Disease Stakeholders Using Facebook Social Media Platform Open Access

Walker, Aisha L. (2016)

Permanent URL: https://etd.library.emory.edu/concern/etds/3t945r493?locale=en
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Abstract

Sickle cell disease (SCD) is a chronic, non-curable, genetic blood disorder that imposes significant health care burdens for individuals, their families, and society. Clinical complications of SCD result in multi-organ damage and shortened life span for patients, and create substantial healthcare costs. Hydroxyurea (HU) is currently the only disease-modifying drug approved for SCD. It is safe and efficacious for decreasing SCD complications and improving mortality. However, HU is underutilized, which poses a problem for decreasing SCD-related morbidity and mortality. This study employs qualitative analysis of social media user-generated data to examine of perceptions of HU among a broad sample of SCD stakeholders.

We performed textual content analysis of Facebook messages and comments posted in a SCD-specific Facebook group to identify major themes related to patients' and caregivers' perceptions of HU. Social support of the Facebook group was a major theme that was evidenced by the posting of questions and answers to resolve stakeholders' concerns related to HU. Qualitative analysis identified themes that perceived efficacy and side effects are associated with a range of valance and opinions of HU. In the Facebook comments, favorable valance and opinions of HU were associated with high efficacy and few or minor side effects; whereas non-favorable ones were associated with lack of efficacy and numerous or harsh side effects. Inductive analysis revealed the emergent themes of HU masking symptoms of SCD to cause harm and knowledge of HU as a cancer drug can be a deterrent to SCD therapy. These two themes may be additional barriers to HU utilization that warrant further investigation. Identification of these themes represent perceptions of HU captured from online user-generated content.

We conclude that the Facebook social media platform not only serves as a supportive resource for SCD community, but can also provide insight into perceptions among SCD stakeholders. The information from this study contributes knowledge that can aid in addressing HU underutilization. Furthermore, this study has significant implications for the utility of Facebook for SCD-related research, and broader implications that social media may be a valuable resource for future public health projects.

Table of Contents

CHAPTER ONE: INTRODUCTION......................................... 1

Overview of the Problem................................................... 1

Problem Addressed by Thesis Project.................................. 1

Purpose of Thesis Project.................................................. 2

Significance Statement..................................................... 2

Definition of Terms.......................................................... 3

CHAPTER TWO: REVIEW OF THE LITERATURE........................ 5

Overview....................................................................... 5

The Burden of Sickle Cell Disease....................................... 5

Hydroxyurea Improves Clinical Course of SCD...................... 8

The Problem of HU Underutilization.................................... 9

Social Media, Facebook, and Public Health Research.............. 10

Harnessing the Power of Facebook for Sickle Cell Research.... 13

Concepts and Models of Health Behavior...............................15

Health Behavior Concepts Applied to SCD and HU.................. 18

Summary of Current Problem............................................. 22

CHAPTER THREE: METHODOLOGY........................................ 24

Research Design.............................................................. 24

Data Source and Datasets................................................. 24

Coding of Original Message Text for Purposeful Sampling........ 27

Selection of Comment Posts for Analysis...............................29

Latent Content Coding of Comment Posts.............................. 29

Identification of Major Themes in the User-generated Data...... 32

CHAPTER FOUR: RESULTS.................................................. 33

Overview........................................................................ 33

Description of Post Characteristics....................................... 33

Comment posts yielded data for assessing social support and perceptions of HU................................................................................ 36

Valence of HU Ranges among Stakeholders...........................37

Expectations and Perceived Efficacy of HU............................ 39

Perceived Side Effects of HU.............................................. 41

Perceptions Vary by Demographics...................................... 42

Other Perceptions of HU.................................................... 45

Summary........................................................................ 47

CHAPTER FIVE: DISCUSSION.............................................. 48

Summary of Study............................................................ 48

Study Results Fit the Proposed Integrated Framework of Health

Behavior.......................................................................... 49

Limitations....................................................................... 57

Recommendations............................................................. 58

Conclusion....................................................................... 59

REFERENCES.................................................................... 61

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