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TitleThe Impact of Ecological Factors on the Lived Experiences of Low
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Table of Contents
                            UNF Digital Commons
	2015
Stories of Challenge and Resilience: The Impact of Ecological Factors on the Lived Experiences of Low Income, Urban Young Adults Living with HIV/AIDS
	Kathleen Anne Thoma
		Suggested Citation
Title - Stories of Challenge and Resilience: The Impact of Ecological Factors on the Lived Experiences of Low Income, Urban Young Adults Living with HIV/AIDS
Dedication
Acknowledgments
Table of Contents
List of Tables
List of Figures
Abstract
Chapter 1: Introduction
	Background and Conceptualization of the Issue
		HIV/AIDS
		The Link between Socioeconomic Status and Health
		Health Literacy
	Problem Statement
	Purpose Statement
	Research Questions
	Overview of the Conceptual Framework
	Overview of the Methodology
	Significance of the Research
	Delimitations and Limitations of the Study
	Definitions of Key Terms and Acronyms
	Organization of the Study
	Chapter Summary
Chapter 2: Review of the Literature
	Developmental Aspects of Young Adulthood
		Characteristics
		Sociocultural Aspects
	The Millennial Generation
		Characteristics
		Attitudes
		Sociocultural Aspects
	Implications of Living in a Low Income, Urban Area
		White Flight and Racial Discrimination
			Concentration of Low Income, Minorities in the Inner City
		Poverty and Social Problems
		Low Socioeconomic Status and Poor Health Outcomes
	Implications of Living with HIV/AIDS
		Social Aspects
		Life Stage Implications
		General Stigma
		Stigma and Discrimination Related to Living with HIV/AIDS
		Studies about Living with HIV/AIDS
		Sexuality and LGBTQ Issues
		Racial and Historical Issues
	Chapter Summary
Chapter 3. Procedures and Methods
	The Qualitative Paradigm
	Qualitative Method: Phenomenology
	Site Selection: Context and Access
	Participants and Participant Selection
	Data Collection Procedures
	Data Sources
	Data Credibility, Trustworthiness, and Rigor
	Self as Researcher
	Insider versus Outsider Perspective
	Ethical Issues
	Data Analysis
	Chapter Summary
Chapter 4: Data Analysis and Results
	Participants
	Participant Descriptions
		Emily
		William
		Mia
		Leo
		Lily
		Henry
		Isaac
		Nathan
		Charlotte
		Olivia
		Noah
		Ella
		Jacob
		Jack
		Ava
		Nicholas
	Treatment, Cleaning, and Sorting of Data
	Results
	Results with Interview Excerpts
		Theme #1: Diagnosis Reactions
			Challenges, barriers, and stressors
			Assets, strengths, and supports
			Needs and suggestions
		Theme #2: Perinatally Acquired Participants: Learning Their Status
			Challenges, barriers, and stressors
			Assets, strengths, and supports
			Needs and suggestions
		Theme #3: Stigma versus Acceptance
			Challenges, barriers, and stressors
			Assets, strengths, and supports
			Needs and suggestions
		Theme #4: Disclosure
			Challenges, barriers, and stressors
			Assets, strengths, and supports
			Needs and suggestions
		Theme #5: Relationships/Marriage/Family
			Challenges, barriers, and stressors
			Assets, strengths, and supports
			Needs and suggestions
		Theme #6: Medication Adherence
			Challenges, barriers, and stressors
			Assets, strengths, and supports
			Needs and suggestions
		Theme #7: Goals Pursuit
			Challenges, barriers, and stressors
			Assets, strengths, and supports
			Needs and suggestions
		Theme #8: Education
			Challenges, barriers, and stressors
			Assets, strengths, and supports
			Needs and suggestions
		Theme #9: Community Education/Knowledge Level
			Challenges, barriers, and stressors
			Assets, strengths, and supports
			Needs and suggestions
		Theme #10: Physical Effects
			Challenges, barriers, and stressors
			Assets, strengths, and supports
			Needs and suggestions
		Theme #11: Mental Health Effects
			Challenges, barriers, and stressors
			Assets, strengths, and supports
			Needs and suggestions
		Theme #12: Health Services
			Challenges, barriers, and stressors
			Assets, strengths, and supports
			Needs and suggestions
		Theme #13: HIV Support Groups
			Challenges, barriers, and stressors
			Assets, strengths, and supports
			Needs and suggestions
		Theme #14: Support Services
			Challenges, barriers, and stressors
			Assets, strengths, and supports
			Needs and suggestions
		Theme #15: Faith/Religion
			Challenges, barriers, and stressors
			Assets, strengths, and supports
			Needs and suggestions
		Theme #16: Inner Resilience and Positive Attitudes
			Challenges, barriers, and stressors
			Assets, strengths, and supports
			Needs and suggestions
		Theme #17: Helping Others and Activism
			Challenges, barriers, and stressors
			Assets, strengths, supports, needs, and suggestions
	Chapter Summary
Chapter 5: Summary, Conclusions, Implications, and Suggestions for Future Research
	Findings
		Major Challenges and Barriers
		Major Supports and Strengths
		Participant Suggestions
	Limitations
	Implications for Theory Development
		The Ecological Model of Human Development
		Resilience
		The Developmental Aspects of Young Adults and the Millennial Generation
		Implications of Living in a Low Income, Urban Area
		Implications of Living with HIV/AIDS
	Implications Related to Practice and Policy
	Implications for Education and Educational Leadership
	Reflexivity
	Suggestions for Future Research
	Conclusions
References
Appendix A: Interview Guide
Appendix B: Initial Telephone Script for Approaching Potential Participants about Study Participation: Current (clinic name deleted) Patients
Appendix C: Initial Telephone Script for Approaching Potential Participants about Study Participation Individuals Who Learned about the Study from the Flyer or Another Individual/Agency
Appendix D: Revised Telephone Script for Approaching Potential Participants about Study Participation: Current (clinic name deleted) Patients
Appendix E: Revised Telephone Script for Approaching Potential Participants about Study Participation Individuals Who Learned about the Study from the Flyer or Another Individual/Agency
Appendix F: Initial Recruitment Flyer
Appendix G: Revised Recruitment Flyer
Appendix H: Initial Consent Form
Appendix I: Revised Consent Form
Appendix J: University of Florida IRB Approval Letter
Appendix K: University of North Florida IRB Approval Letter
                        
Document Text Contents
Page 1

UNF Digital Commons

UNF Graduate Theses and Dissertations Student Scholarship

2015

Stories of Challenge and Resilience: The Impact of
Ecological Factors on the Lived Experiences of Low
Income, Urban Young Adults Living with HIV/
AIDS
Kathleen Anne Thoma
University of North Florida

This Doctoral Dissertation is brought to you for free and open access by the
Student Scholarship at UNF Digital Commons. It has been accepted for
inclusion in UNF Graduate Theses and Dissertations by an authorized
administrator of UNF Digital Commons. For more information, please
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© 2015 All Rights Reserved

Suggested Citation
Thoma, Kathleen Anne, "Stories of Challenge and Resilience: The Impact of Ecological Factors on the Lived Experiences of Low
Income, Urban Young Adults Living with HIV/AIDS" (2015). UNF Graduate Theses and Dissertations. 612.
https://digitalcommons.unf.edu/etd/612

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The participants expressed a great deal of anguish over stigma that was directed

towards them from family and friends.

Assets, strengths, and supports.

Participants mentioned the following assets, strengths, and supports related to

stigma versus acceptance. Most participants had at least one person in their lives that

accepted their situation and provided support. Some only had one or two people in their

lives who they had told and who they could rely on for support, while others had a wider

network of support. Participants mentioned a variety of friends and family members who

were supportive.

I have a select few people that I feel I can be open with and say something about

like mom, of course, going to always be the first. I have a couple of close

aunts and uncles that understands also in the medical field. They

understand so I feel open more to them but still shut out from a lot of people.

(William, personal communication, December 2014)



I also learned that there are friends out there and family that actually accept

people like me. (Nicholas, personal communication, January 2015)



My mom and my grandmother and the rest of my family. They are really

supportive. They ask me all the time: are you taking your meds? Yes, mom,

being compliant. Going to my doctors all the time? Yes, mom. She is really

supportive. (Leo, personal communication, January 2015)



Most of the participants had a close family member or friend who they could rely

on for support. Their mother was the person most frequently named as a source of

support.

Needs and suggestions.

When asked about needs and suggestions related to stigma versus acceptance,

most participants felt that the knowledge about HIV/AIDS in their communities was low.

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They felt that more community education about HIV/AIDS might lead to more

understanding and acceptance.

(When asked her opinion about the level of knowledge about HIV/AIDS in her

community) Very low, it's very low, and there are a lot of misunderstandings.

Like I say, it's a bad thing. I am not going to sit here and lie and say okay. It's

bad, but people make it worse than what it really is. They are not educated. They

need more education about it. (Emily, personal communication, November 2014)


Many of the participants had experienced stigma in the form of rejection,

taunting, and shunning. In contrast, most also reported that they had a small number of

friends or family members who accepted them and supported them. Many noted that

knowledge about HIV/AIDS was low in their communities and that more community

education might reduce misinformation and stigma.

Theme #4: Disclosure

Challenges, barriers, and stressors.

Participants reported a variety of challenges, barriers, and stressors when asked

about their experiences when disclosing their HIV status to others. Many reported that

they were reluctant to disclose their HIV status to others for fear of rejection. One young

man mentioned that if his friends back home found out he was gay and had HIV, he

would be shunned. Some reported that they only disclosed to close friends and family

members who they expected would be supportive. Some participants had experienced

rejection when disclosing their HIV status to a partner. Several reported that they always

disclosed their HIV status to their sexual partners while others reported that they were

reluctant to disclose to sexual partners but were very careful to use protection such as

condoms so that they would not spread HIV to others.

When I told her (his girlfriend), I got a reaction that really hurt my feelings. She

looked at me as though she was beyond disgusted and she have a word to

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Thoma, K. A., Thomas, G. L., Usitalo, A. M., Ravi, M. S., Cook, R. L., & Rathore,
M. H. Pharmacotherapy for Hazardous Drinking in HIV-Infected Women: The

University of Florida Center for HIV/AIDS Research, Education and Service’s (UF

CARES) Experience. Presented as a poster presentation at the University of Florida

Health Science Center’s Research Day, Jacksonville, FL, May 17, 2012.



Thoma, K. A. START Study (Strategic Timing of AntiRetroviral Treatment).
Presented at Research, Yesterday and Today; Dispelling the Myths about Clinical

Trials, University of Florida Health Science Center, Jacksonville, FL, June 25, 2011.



Thoma, K. A. Discriminant Analysis: A Type of Canonical Correlation. Presented as
part of a Symposium on The Multivariate General Linear Model: Using Canonical

Correlation as a Frame of Reference for Understanding Other Multivariate Statistical

Models, Mid-South Educational Research Association Annual Meeting, Baton

Rouge, LA, November 4-6, 2009.



Renninger, P., Nichols, C., Peterson, J., & Thoma, K. Why Write a Grant? Presented
as a workshop at the 18th International Conference on College Teaching and

Learning, Ponte Vedra, FL, April 2-5, 2007.



Schwartz, R., Resnicow, K., Hamre, R., Dietz, W., Slora, E., Myers, E., Sullivan, S.,
Thoma, K., & Wasserman, R. The Healthy Lifestyles pilot study. Presented as a

platform presentation at the 2006 Pediatric Academic Societies' Annual Meeting, San

Francisco, CA, April 29-May 2, 2006.



Pascoe, J., Little, D., Slora, E., Thoma, K., & Wasserman, R. Patient visits to a
midwestern primary care practice-based research network: A comparison to two

national data sets. Presented as a poster presentation at the 2005 Pediatric Academic

Societies' Annual Meeting, Washington D.C., May 14-17, 2005.



Slora, E. J., Thoma, K. A., Wasserman, R. C., Pedlow, S. E., & Bocian, A. B.
Representativeness of patient visits to a national practice-based research network: A

comparison of Pediatric Research in Office Settings (PROS) and National

Ambulatory Medical Care Survey (NAMCS) data. Presented as a presidential

plenary presentation at the 2004 Pediatric Academic Societies Meeting, San

Francisco, CA, May 1-4, 2004.



Serwint, J. R., Thoma, K. A., Dabrow, S. M., Hunt, L. E., Barratt, M. S., Shope, T.
R., & Darden, P. M., Comparing patients seen in continuity clinics and the National

Ambulatory Medical Care Survey (NAMCS): A study from the Continuity Research

Network (CORNET). Presented as a presidential plenary presentation at the 2004

Pediatric Academic Societies Meeting, San Francisco, CA, May 1-4, 2004.



Mohr, J. J., Lannon, . CM., Slora, E. J., Wasserman, R. C., Thoma, K. A., Kleckner,
D., Uhring, L., & Woods, D. Learning from Errors in Ambulatory Pediatrics

(LEAP). Presented as a poster presentation at the Chicago Patient Safety Forum,

http://www.aap.org/research/abstracts/06abstract13.htm
http://www.aap.org/research/abstracts/06abstract13.htm
http://www.aap.org/research/abstracts/05abstract12.htm
http://www.aap.org/research/abstracts/05abstract12.htm
http://www.aap.org/research/abstracts/05abstract12.htm

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2003 Showcase of Patient Safety Improvements, Institute of Medicine of Chicago,

Chicago, IL, October 16, 2003.





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