The Social Networks of Adolescents with Chronic Illness: An Exploration of Social Support During Hospitalization Restricted; Files Only

Abstract

The Social Networks of Adolescents with Chronic Illness: An Exploration of Social Support During Hospitalization 

By Kaitlyn Brus

 

Background: Consistency and reliability of social support networks during adolescents is important for personal growth, building and maintenance of self-esteem, and preparation for the transition into adulthood. For adolescents with life-long chronic illness, such as sickle cell disease or cystic fibrosis, frequent hospitalization can be disruptive to normal socialization, which may affect this period of self-actualization and self-determination. Despite this knowledge, there has been little research to conceptualize the role of inpatient hospitalization on social networks of adolescents with genetic chronic illness.

Objectives: This analysis aimed to describe the social networks of adolescents with sickle cell disease and identify changes in social support during in-patient hospitalization and the impact these changes had on adolescents with sickle cell disease.

 

Methods: Ten semi-structured qualitative interviews with adolescents aged 14-19 who were diagnosed with sickle cell disease, were hospitalized within the prior six months, and lived in the United States were conducted through Zoom software. All participants were recruited via parent-targeted digital recruitment flyers shared through sickle cell advocacy organizations and pediatric clinics. Audio-recorded interviews were transcribed verbatim using Descript. Template analysis was conducted using NVivo 14 for data management and coding.

Results: Analysis produced three major themes among participants: (1) Development of a personal identity shaped by their disease and their surrounding network; (2) How participants’ self-perception dictates how they socialize and vice versa; and (3) Defining relationship types, describing barriers and facilitators of these relationships and what modalities of support from these relationships are meaningful for young people with sickle cell disease. 

Table of Contents

TABLE OF CONTENTS

CHAPTER 1: INTRODUCTION…………………………………………………………………………………………..1

Introduction and Rationale……………………………………………………………………………………………...1

Problem Statement…………………………………………………………………………………………………………1

Purpose Statement………………………………………………………………………………………………………….2

Research Objectives………………………………………………………………………………………………………...2

Significance Statement…………………………………………………………………………………………………....3

CHAPTER 2: BACKGROUND……………………………………………………………………………………………..4

Disease Epidemiology, Etiology, and Progression………………………………………………………..…...5

The Psychology of Adolescence and Chronic Disease……………………………………………………….8

Social Support Theory and Types of Social Support…………………………………………………….…10

Social Support Research and Programming Among Adolescents with Cancer………………….13

Conclusion……………………………………………………………………………………………………………………15

CHAPTER 3: METHODS…………………………………………………………………………………………………16

Study Population………………………………………………………………………………………………………….16

Recruitment of Participants………………………………………………………………………………………….16

Data Collection…………………………………………………………………………………………………………….17

Data Analysis……………………………………………………………………………………………………………….18

Ethical Considerations………………………………………………………………………………………………….19

CHAPTER 4: RESULTS…………………………………………………………………………………………………...21

Sickle Cell Disease Identity…………………………………………………………………………………………….22

   Disease Conception, Limitations, and Accommodations………………………………………………22

   Social Network Architecture………………………………………………………………………………………24

Self-Relationship and Communication…………………………………………………………………………...28

   Pity and Burden…………………………………………………………………………………………………………29

   Alone vs Loneliness……………………………………………………………………………………………………31

Defining Relationships: Socialization and Support…………………………………………………………33

   Barriers and Facilitators of Socialization…………………………………………………………………….34

Socialization & Support Outside of Hospitalization……………………………….……………..34

Socialization & Support During Hospitalization…………………………………………………..38

   What is Meaningful Support?........................................................................................................................40

CHAPTER 5: DISCUSSION………………………………………………………………………………………………44

Contribution to Literature……………………………………………………………………………………………..49

Public Health Implications and Recommendations…………………………………………………………50

Strengths and Limitations……………………………………………………………………………………………..52

Conclusion……………………………………………………………………………………………………………………53

REFERENCES………………………………………………………………………………………………………………..54

APPENDIX…………………………………………………………………………………………………………………….59

About this Master's Thesis

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School	Rollins School of Public Health
Department	Hubert Department of Global Health
Degree	M.P.H.
Submission	Master's Thesis
Language	English
Research Field	Health Sciences, Public Health
Mot-clé	disease identity sickle cell disease social support
Committee Chair / Thesis Advisor	Dr. Mary Beth Weber, Emory University Dr. Jane Lowers, Emory University

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