Examining Health Literacy and Medical Discrimination in Black Caregivers of Persons Living with Dementia: An Explanatory Sequential Mixed Methods Study Public

Abstract

Background: Disparities in the Black dementia family caregiving experience are well-documented, specifically in healthcare management. Black caregivers experience challenges with healthcare system navigation, communication with healthcare providers, and have limited knowledge of and access to dementia-related information and resources. These tasks require adequate health literacy. Individual health literacy may contribute to disparities in healthcare management among Black caregivers of persons living with dementia (PLWD). Despite the existing exploration of health literacy and previous study findings highlighting its importance in family caregiving, these studies included few to no Black caregivers. Rates of limited health literacy are higher among Black Americans. Medical discrimination may also contribute to challenges with healthcare management among Black caregivers, as well as present a barrier to achieving/maintaining optimal health literacy.

Purpose: The purpose of this study was to examine health literacy and medical discrimination in Black caregivers of PLWD. 

Methods: An explanatory sequential mixed methods study was conducted in a sample of Black caregivers of PLWD. A cross-sectional quantitative design was first carried out, and a survey was distributed to 99 Black caregivers across the U.S. Follow-up qualitative procedures consisted of 4 focus groups with a purposeful sub-sample of 10 caregivers guided by the Discover and Define phases of the Design Thinking Process. Data integration took place at the planning stage for qualitative procedures (methods) and analytic and interpretation stages. Meta-inferences were drawn from integrated data. 

Findings: Caregivers scored highest on the health literacy scale ‘Understanding health information well enough to know what to do’ and lowest on the scale ‘Feeling understood and supported by healthcare providers.’ Bivariate analyses of health literacy scales and medical discrimination scores were all significant; as caregivers’ experiences of medical discrimination while seeking care for PLWD increased, health literacy scale scores decreased. Qualitative data gave a deeper understanding of Black caregivers’ most salient health literacy problems. Receiving health information in medical jargon; insurance coverage dictates navigation; and healthcare professionals’ lack of cultural competency were some of the key problems discussed. Integrated findings revealed the importance of health literacy as a shared responsibility and caregivers’ challenges further amplified by healthcare providers and organizations. 

Table of Contents

Introduction…………………………………………………………………………………………….….....1

Background of the Problem……………………………………………………………………….……...1

Purpose of Study and Summary of Papers……………………………………………………………..7

Chapter 1: The Association of Health Literacy and Medical Discrimination among Black

Caregivers of Persons Living with Dementia: A Cross-Sectional Study………………………….10

Abstract………………………………………………………………………………………………….......10

Introduction…………………………………………………………………………………………….......11

The Health Literacy Skills Framework………………………………………………………………..13

Medical Discrimination & The National Institute on Aging

Health Disparities Research Framework………………………………………………………........13

Methods………………………………………………………………………………………………….......14

Ethics Approval……………………………………………………………………………………..........14

Recruitment & Eligibility…………………………………………………………………………….....14

Survey Measures…………………………………………………………………………………....….....15

Procedures……………………………………………………………………………………….…..........17

Data Analysis…………………………………………………………………………………….….........17

Results…………………………………………………………………………………………….……........18

Discussion……………………………………………………………………………………………….......19

Conclusion & Future Research………………………….……………………………………………...22

Tables

Table 1 Health Literacy Questionnaire (HLQ) items and interpretation

of scale scores …………….............................................................................................23

Table 1.1 Socio-Demographic Profile of Caregivers……………………………………………..…25

Table 1.2 Health Literacy Questionnaire (HLQ) and Discrimination

in the Medical Setting (DMS) scores……………………………………………….......................26

Chapter 2: “The Problem with Healthcare”: Understanding Black Caregivers’ Fundamental

Problem in Healthcare Management Using the Design Thinking Process……………….………27

Abstract………………………………………………………………………………………….…….........27

Introduction…………………………………………………………………………………...…….....…..28

Methodology………………………………………………………………………………………….….....29

Design Thinking Approach………………………………………………………………………..…...30

Caregiver Participants……………………………………………………………………………..…....31

Data Collection…………………………………………………………………………………….......…31

Data Analysis………………………………………………………………………………….…..….......33

Results………………………………………………………………………………………….…..….........34

Discussion………………………………………………………………………………………….….........40

Study Implications & Next Steps…………………………………………………………………....…43

Tables and Figures

Figure 1 Double Diamond Design Thinking Model……………………………………….………..46

Table 2 Demographics of Caregiver Focus Groups………………………………………….………47

Table 2.1 Discover Phase Pre-Determined Themes and Challenges……………………….…..48

Chapter 3: Outcomes of Data Integration in a Mixed Methods Study

on Health Literacy in Black Dementia Caregivers………………………………………………….…49

Abstract…………………………………………………………………………………………….............49

Introduction………………………………………………………………………………………..….......50

Background………………………………………………………………………………………..….......50

Study Purpose……………………………………………………………………………………..…......52

Methods……………………………………………………………………………………………............53

Research Design & Conceptual Framework……………………………………………………..….53

Caregiver Recruitment……………………………………………………………………….….…......54

Overview of Quantitative and Qualitative Phases…………………………………………………55

Data Integration…………………………………………………………………………………...........55

Results………………………………………………………………………………………………...........59

Discussion…………………………………………………………………………………………............63

Conclusion…………………………………………………………………………………………….......66

Tables and Figures

Figure 2 Conceptual Model…………………………………………………….............................68

Figure 3 Explanatory Sequential Design Procedures……………………………………………..69

Table 3 Focus Group Questions Joint Display……………………………………………………...70

Table 3.1 Integrated Quantitative and Qualitative Results & Meta-Interferences………...71

Chapter 4: Integrative Summary………………………………………………………………….......…73

References……………………………………………………………………………………………...........78

List of Appendices

Appendix A: Recruitment Flyer…………………………………………………………………….......90

Appendix B: Survey……………………………………………………………………………….........…91

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School	Laney Graduate School
Department	Nursing
Degree	Ph.D.
Submission	Dissertation
Language	English
Research Field	Health Sciences, Aging Gerontology Health Sciences, Nursing
Mot-clé	Health Disparities Dementia
Committee Chair / Thesis Advisor	Fayron Epps , Emory University Ken Hepburn , Emory University
Committee Members	Iris Feinberg , Georgia State University Stephanie Bennett , Emory University Leila Aflatoony , Georgia Institute of Technology

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