The Association of Depression and Stigma in Caregivers of Children with Cystic Fibrosis Open Access

Kuykendall, Mary Danielle (2013)

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The purpose of this research survey was to investigate the relationship between depression and perceived stigma in caregivers of children with cystic fibrosis (CF). Several studies have shown that caregivers of children with CF are at an increased risk for depression. Additionally, perceived stigma has been shown to be associated with this population. Theory of Reasoned Action was used to investigate how social norms (i.e., stigma) can influence attitudes (i.e., depression) as high perceived stigma combined with high levels of depression can lead to increased caregiver strain, decreasing caregivers 'desire to carry out behavioral intentions or behaviors, such as seeking treatment for their depression, or fulfilling their roles as caregivers. Thirty-five caregivers of children with CF completed a short survey. The presence and severity of depressive symptoms was measured using the Center for Epidemiologic Studies Depression Scale (CES-D) and the Parent Stigma Scale was used to measure stigma. Results show that with increased depressive symptoms in caregivers, perceived stigma also increased. In a linear regression model, perceived stigma was significantly associated with depressive symptoms when sex was controlled. Additionally, males were found to have higher depression scores compared to females when perceived stigma scores were controlled. Recommendations include regular screening for depressive symptoms in caregivers as levels are often see above population norm. Also, primary care providers are recommended to assess perceived stigma in caregivers in order connect those who do feel stigmatized to additional recourses to help combat the stigma and/or cope with their feelings.

Table of Contents

Chapter I. Introduction 1

Theory of Reasoned Action 2

Purpose 4

Chapter II. Review of the Literature 5

Cystic Fibrosis 5

Background 5

Who CF affects 6

Diagnosis 6

Treatment 7

Prognosis 8

Stigma 9

Defining Stigma 9

Chronic Disease and Stigma 9

Courtesy Stigma 9

Stigma and CF 10

Depression 11

Description 11

Depression in Caregivers 11

Depression in Caregivers of Children with CF 12

Perceived Stigma and Depression 15

Caregiver Strain 16

Caregiver Strain and CF 16

Conclusion 17

Chapter III. Method 18

Participants 18

Target Population 18

Recruitment 18

Procedures 18

Measures 19

Sample 19

Study Variables 19

Risks of Participation 20

Plans for data management and monitoring 21

Confidentiality 21

Informed Consent 21

Data Collection Instrument 22

Analysis Procedures 22

Chapter IV. Results 24

Descriptive Statistics 24

Research Question 1 26

Research Question 2 26

Chapter V. Discussion 29

Findings 29

Conclusions 30

Strengths and Limitations 31

Methodology 31

Sample Size and Recruitment 32

Instrument Design 33

Implications and Recommendations for Research and Practice 34

Recommendation for Future Research 34

Implications for Public Health 34

References 36

Appendix 43
Appendix A. Data Collection Instrument 43

Appendix B. Informed Consent 47

Appendix C. Distribution of Study Variables 49

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